>>DR. JAYNE AND DR. REDDY
IT IS MY PLEASURE AND HONOR TO
WELCOME ALL MUCH -- ALL OF YOU
TO THE WORKING SECOND OF THE
NICHD STILLBIRTH GROUP.
WE HAVE A BUSY AGENDA TODAY.
OUR TASK IS TO GO THROUGH THE
SECOND HALF OF OUR SUBJECT
MATTER EXPERT PRESENTATIONS.
WE COLLECT ED INFORMATION ON
COLLECTING EVIDENCE ON
STILLBIRTHS AND TODAY WE'LL
FOCUS ON PSYCHOLOGICAL IMPACT ON
MOTHERS FOLLOWING STILLBIRTH AND
THEN FOCUS ON RISK FACTORS FOR
STILLBIRTH.
BEFORE I START INTRODUCING
SPEAKERS I'D LIKE TO INVITE
DR. ALISON CERNICH THE DEPUTY
DIRECTOR OF NICHD TO FRAME THE
TASK FORCE CHARGE AND THE ROLE
OF FEDERAL AGENCIES.
ALISON.
>>THANK YOU SO MUCH, LUCKY.
SO TO REMIND EVERYONE OF OUR
CHARGE OF THE WORK GROUP AND
THEN TO TALK A LITTLE BIT ABOUT
TE ROLE OF THE DIFFERENT FEDERAL
AGENCIES.
THIS WAS RAISED DURING THE LAST
SESSION AND I THINK WOULD BE
HELPFUL FOR EVERYBODY TO GET A
BIT OF AN ORIENTATION TO THIS.
I ALSO WANT TO THANK OUR
COLLEAGUES FROM THE OTHER
FEDERAL AGENCIES WHO JOINED THIS
WORKING GROUP AS EX-OFFICIOS
BECAUSE I THINK IT WILL
DEFINITELY HELP PEOPLE
UNDERSTAND WHAT THE DIFFERENT
ROLES ARE AS YOU ALL ARE
PRESENTING.
JUST BY WAY OF BACKGROUND WE
FORMED THE WORKING GROUP OF OUR
COUNCIL IN 2022 BECAUSE WE WERE
ASKED BY THE DEPARTMENT OF
HEALTH AND HUMAN SERVICES TO
LEAD A TASK FORCE TO EXAMINE
STILLBIRTH IN THE UNITED STATES.
THE REQUEST FOR US AS A
DEPARTMENT TO CREATE THIS TASK
FORCE WAS DESCRIBED IN FISCAL
YEAR 2022 U.S. HOUSE OF
REPRESENTATIVES REPORT LANGUAGE.
THE REPORT LANGUAGE REQUESTS
FUNDING OF $1 MILLION AND THE
APPROPRIATION TO SUPPORT THIS
WORK IS ABOUT $750,000 IN THE
APPROPRIATIONS ACT.
SO OBVIOUSLY WE KNOW STILLBIRTH
AFFECTS A NUMBER OF PREGNANCY AS
A YEAR WITH 24,000 STILLBORN
BABIES BORN EVERY YEAR AND THIS
HAS REMAINED THE SAME FOR 30
YEARS.
THE REPORT ASKED US TO FORM THE
TASK FORCE TO INCLUDE THE CDC,
NIH, SPECIALTY ORGANIZATIONS AND
MATERNAL AND FETAL MEDICINE
SPECIALISTS AND ASKED US TO THEN
PROVIDE A REPORT BACK TO
CONGRESS ON THE FOUR AREAS OF
FOCUS.
SO ONE WAS THE CURRENT BARRIERS
TO COLLECTING DATA ON
STILLBIRTHS THROUGHOUT THE
U.S. WHICH I THINK YOU HEARD A
WONDERFUL PRESENTATION LAST
WEEK.
SORRY, LAST MEETING.
AND INFORMATION ON SOME OF THE
WAYS THE DATA IS COLLECTED AND
BARRIERS IN THE ELECTRONIC
HEALTH RECORDS AND COMMUNITIES
OF HIGHER RISK OF STILLBIRTH.
THE PSYCHOLOGICAL IMPACT AND
TREATMENT FOR MOTHERS AND THE
KNOWN RISK FACTORS FOR
STILLBIRTH.
THOSE FOUR AREAS ARE THE AREAS
WE WERE ASKED TO COVER IN
FORMING THE TASK FORCE.
I WANT TO GO THROUGH THE ROLES
OF OUR ORGANIZATIONS SO
EVERYBODY IS AWARE OF WHAT WE DO
IN THE DEPARTMENT OF HEALTH AND
HUMAN SERVICES AND WHAT SOME OF
OUR PARTNERS IN THE WORKING
GROUP ARE ALSO RESPONSIBLE FOR.
THE NATIONAL INSTITUTES OF
HEALTH AND NICHD AND WE HAVE A
NUMBER OF CENTERS AN OFFICES AND
WE'RE THE LARGEST FUNDER OF
MEDICAL AND BEHAVIORAL RESEARCH.
WE WERE REQUESTED TO LEAD THE
TASK FORCE BY HHS AND BRING
TOGETHER A NUMBER OF GROUPS TO
PROVIDE EVIDENCE-BASED
RECOMMENDATIONS IN THE REPORT.
OUR ROLE IS TO FUND RESEARCH
PROJECTS.
AND WHETHER THAT BE AT ACADEMIC
MEDICAL CENTERS SMALL BUSINESSES
OR PEDIATRIC HOSPITALS OR OTHER
ACADEMIC INSTITUTIONS.
THAT'S REALLY OUR ROLE IS TO
FUND RESEARCH.
WE DO PROVIDE SOME PUBLIC HEALTH
COMMUNICATION SUPPORT AND DO
HAVE SOME EDUCATION PROGRAMS BUT
IN LARGE PART OUR GOAL IS TO
FUND THE RESEARCH THAT PROVIDES
THE EVIDENCE THAT CAN BE USED BY
OTHER AGENCIES.
OUR PARTNERS AT THE CENTERS FOR
DISEASE CONTROL AND PREVENTION
AND WE'RE VERY GRATEFUL THAT
THEY HAVE JOINED US FROM TWO
DIFFERENT DIVISIONS AT CDC.
WE HAVE BOTH THE NATIONAL CENTER
ON BIRTH DEFECTS AND
DEVELOPMENTAL DISABILITIES YOU
HEARD FROM AND THE NATIONAL
CENTER FOR CHRONIC DISEASE
PREVENTION AND PROMOTION AND THE
DIVISION OF REPRODUCTIVE HEALTH.
THEY ARE BOTH ON THIS CALL.
AND CDC'S ROLE IS TO PREVENT,
DETECT AND RESPOND TO DISEASES
AND PREVENTIBLE CONDITIONS AND
RESPOND TO PUBLIC HEALTH
EMERGENCIES AS WE'VE SEEN WITH
THE COVID PANDEMIC.
THEIR ROLE IS TO HELP IN TERMS
OF GETTING US EVIDENCE IN TERMS
OF EPIDEMIOLOGY RESEARCH AND DO
THE CAMPAIGN LED BY
DR. BARFIELD.
YOU'LL HEAR FROM THEM AGAIN FROM
A DIFFERENT DIVISION AND THEY
CAN SPEAK MORE TO THEIR ROLE.
FOR THE NATIONAL CENTER OF
HEALTH STATISTICS, PART OF CDC,
YOU HEARD FROM THEM LAST
MEETING, THEY COLLECT, ANALYZE
AND DISSEMINATE HEALTH DATA AND
STATISTICS INCLUDING VITAL
STATISTICS.
THESE ARE FOLKS RELATED TO BIRTH
CERTIFICATES OR MORTALITY
REPORTING.
OUR PARTNERS AT THE HEALTH
RESOURCES AND SERVICES
ADMINISTRATION PROVIDE HEALTH
CARE AND SERVICE TO PEOPLE WHO
ARE GEOGRAPHICALLY ISOLATED,
MEDICALLY VULNERABLE AND HAVE A
ROLE IN TRAINING HEALTH CARE
PROFESSI
PROFESSIONALS.
OUR COLLEAGUES FROM HRSA ARE
HERE TO LISTEN AND LEARN AND
THINK HOW IT WILL IMPACT THEIR
NATIONAL PROGRAMS.
I THINK IN TERMS OF HEALTH CARE
PROFESSIONAL TRAINING, IN TERMS
OF THE MATERNAL AND HEALTH
PROGRAMS PROVIDED THROUGH HRSA,
OFTEN FUNDED THROUGH THE STATES
THROUGH BLOCK GRANT PROGRAMS,
THEY'RE REALLY MORE IN
SUPPORTING DIRECT CARE AND
TRAINING HEALTH CARE
PROFESSIONALS.
FINALLY, OUR COLLEAGUES AT THE
INDIAN HEALTH SERVICES TO
PROVIDE AMERICAN INDIANS AND
ALASKA NATIVES HELP ACCESS
QUALITY CARE.
THEY'RE ACTIVE PARTNERS WITH THE
REST OF US TO HELP ENSURE WE
KNOW OUR AMERICAN INDIAN AND
ALASKA NATIVE POPULATION NOT ALL
LOCATED IN ONE PLACE AND USE THE
INDIAN COLLABORATIVE BUT USE
RESOURCES AND AWARE MANY
AMERICAN INDIAN AND ALASKAN
NATIVES DON'T LIVE NEAR
FACILITIES AND OFTEN ACCESS THE
SAME CARE OTHER MEDICALLY OR
ECONOMICALLY VULNERABLE
INDIVIDUALS ARE ACCESSING.
I THINK WE ARE VERY AWARE WE ARE
A LARGE ECO SYSTEM IN THE
DEPARTMENT HEALTH AND HUMAN
SERVICES AND EACH OF US PLAYS A
VITAL ROLE IN THIS PARTICULAR
ISSUE.
I WANT TO TAKE A MOMENT TO THANK
OUR COLLEAGUES WHO ARE HERE IN
AN EX OFFICIO CAPACITY AND
HELPING IN THE RECOMMENDATIONS
AND THE REPORT TO CONGRESS.
WITH THAT TO SAY THE ROLE OF
NON-GOVERNMENTAL ORGANIZATIONS
AND THESE ARE OUR COLLEAGUES
HERE WITH US THAT REPRESENT THE
AMERICAN COLLEGE OF OBSTETRICS
AND GYNECOLOGY AND THE SOCIETY
OF MATERNAL AND FETAL MEDICINE
AND PEDIATRICS PROVIDERS AND THE
ORGANIZATION LIKE THE MARCH OF
DIMES, THESE FOLKS PLAY KEY
ROLES.
I WANT TO SAY IT'S IMPORTANT TO
MAKE SURE THESE GROUPS ARE AWARE
OF WHAT WE'RE DOING IN THIS
REPORT WILL ALSO BE BROADLY
DISSEMINATED TO THEM.
THE GROUPS DO A NUMBER OF THINGS
INCLUDING ACCESS TO EDUCATIONAL
RESOURCE OR TRAINING TO PATIENTS
AND PROVIDERS, PUBLISHING
EVIDENCE-BASED INFORMATION FOR
PROVIDERS AND ADVOCATING FOR
GROUPS ON RELEVANT ISSUES AND
MANY ARE AWARE ADVOCACY IS
IMPORTANT TO GAIN RESOURCES THAT
WE NEED TO BE ABLE TO DO THIS
WORK THEY ALSO SERVE AS FOCAL
POINTS FOR DIVERSE COMMUNITIES
AND FACILITATE KNOWLEDGE
SHARING.
THAT'S WHERE OUR
NON-GOVERNMENTAL ORGANIZATION
INVOLVED AND WE WANT TO THANK
THEM FOR THEIR ATTENTION AND
CONTINUED SUPPORT OF THIS WORK.
WITH THAT I WILL END AND I'M
HAPPY TO EITHER LOOK AND HE SEE
IF THERE ARE QUESTIONS ABOUT
THIS ONE OR I CAN ALSO BE
AVAILABLE IN THE CHAT I KNOW WE
HAVE A PACKED AGENDA SO I YIELD
TO YOU ALL.
>>WE HAVE NO QUESTIONS AT THE
MOMENT I THINK WE'RE TAKING IT
IN AND WE CAN START WITH THE
FIRST SECTION THE PSYCHOLOGICAL
IMPACT AND TREATMENT FOR MOTHERS
FOLLOWING STILLBIRTH AND WE HAVE
THE DIVISION DIRECTOR OF THE
NATIONAL CENTER FOR CHRONIC
DISEASE PROMOTION AND CENTER FOR
DISEASE CONTROL AND PREVENTION.
>>THANK YOU.
I WANT TO SAY MANY THANKS FOR
THE OPPORTUNITY TO PRESENT SO
THIS GROUP AND THANK YOU SO
MUCH, ALISON, FOR THE GREAT
INTRODUCTION IN TERMS OF THE
COLLECTIVE WORK WE'RE DOING.
I DIRECT THE DIVISION OF
REPRODUCTIVE HEALTH IN THE
NATIONAL CENTER FOR DISEASE
PREVENTION AND PROMOTION AND OUR
FOCUS IS WOMEN'S REPRODUCTIVE
HEALTH AND MATERNAL HEALTH AND
INFANT HEALTH.
WITH THAT WE'RE EXCITED TO TALK
ABOUT THE OPPORTUNITY WITH THE
WORK AROUND STILLBIRTHS.
I'LL HAVE TWO COLLEAGUES
PARTICIPATE.
THE FIRST IS AN EPIDEMIOLOGIST
FOR THE PREGNANCY RISK
ASSESSMENT TEAM IN THE WOMEN'S
HEALTH AND FERTILITY BRANCH.
AND SHE WILL ALSO BE ACCOMPANIED
BY ANOTHER COMMITTEE MEMBER, WHO
IS AN EPIDEMIOLOGIST IN THE
PERINATAL AND INFANT HEALTH TEAM
IN THE MATERNAL AND INFANT
HEALTH BRANCH.
>>THANK YOU.
I'LL GO AHEAD AND SHARE MY
SCREEN.
>>AN EVERYONE SEE THE
PRESENTATION?
>>YES, YOU'RE NOT IN A
PRESENTER MOOD.
NOT SURE YOU'RE ABLE TO DO THAT.
>>THANK YOU, GOOD MORNING AND
THANK YOU FOR THE INTRODUCTION.
AND THANK YOU TO THE NICHD
STILLBIRTH COUNCIL AS WELL FOR
THE OPPORTUNITY TO PRESENT TODAY
ON CDC'S EFFORTS TO LISTEN AND
CAPTURE THE VOICES OF THOSE WHO
HAVE EXPERIENCED A STILLBIRTH.
AS YOU HEARD BEFORE, MY NAME IS
DR. DIEKE AND I HELP SERVE TO
PROVIDE TECHNICAL ASSISTANCE TO
THE PLANS GRANTEE INCLUDING UTAH
WHO IS LOOKED AT THE ASSOCIATED
RISK OF STILLBIRTHS ALSO KNOWN
AS THE SOURCE PROJECT.
THE OBJECTIVES ARE TO PROVIDE A
BRIEF PLAN OVERVUND GIVE YOU --
VIEW AND TO GIVE YOU THE SOURCE
PROTOCOL AND PRESENT KEY COVERS
ON THE SURVEY AND PRELIMINARY
DATA AND NEXT STEPS AND WHAT
SOARS AND A SNAPSHOT OF THE
DIVISION OF REPRODUCTIVE HEALTH
HEAR HER CAMPAIGN AS IT PERTAINS
TO STILLBIRTH PREVENTION.
PRAMS IS A SURVEILLANCE SYSTEM
ESTABLISHED IN 1987 AS PART OF
THE CDC SAFE MOTHERHOOD AND
INFANT HEALTH SURVEILLANCE
SYSTEM FOR BEFORE, AFTER AND
SHORTLY AFTER LIVE BIRTH AND
INFORMATION FROM THE BIRTH
CERTIFICATE AND IT HAS ESTIMATES
OF MANY MATERNAL AND CHILD
HEALTH INDICATORS.
THE CURRENT FIVE-YEAR FUNDING
CYCLE FOR PRAMS INCLUDES 46
STATES AND FOUR CITIES OR
TERRITORIES, D.C., NEW YORK
CITY, PUERTO RICO AND THE
COMMONWEALTH OF NORTHERN MARIANA
ISLANDS AND IT REPRESENTS AROUND
81% OF ALL LIVE BIRTHS.
IT COMPROMISES INDIVIDUALS WHO
HAD A LIVE BIRTH AND AS A
RESIDENT OF THE STATE, CITY OR
TERRITORY.
THEY'VE HAD A BIRTH WITHIN THE
CALENDAR YEAR OF DATA COLLECTION
AND THEY'RE RANDOMLY SAMPLED
FROM THAT JURISDICTION'S BIRTH
CERTIFICATE RECORDS.
ADDITIONALLY, THE PRAMS
POPULATION IS CONTACTED WHEN
THEIR BABY IS 2 TO 6 MONTHS OLD
AND JURISDICTIONS EACH SAMPLE
APPROXIMATELY 1,000 TO 3,000
WOMEN PER YEAR.
PRAMS HAS CONSISTENTLY COLLECTED
DATA ON PRE CONCEPTION AND
PRENATAL CARE TO INFANT SLEEP
ENVIRONMENT.
AND CURRENTLY, PRAMS IS
UNDERGOING A REVISION AND NEW
PHASE OF QUESTIONS FOR THE NINTH
PHASE OF REVISION FOR PRAMS STAR
GET FORD IMPLEMENTATION AN APRIL
2023.
THIS SLIDE SHOWS A FEW OF THE
NEW INDICATORS IN THE UPCOMING
PHASE 9 QUESTIONNAIRE INCLUDING
THE TOPICS SHOWN ON THE SLIDE.
OF NOTE, INCLUDING EXPERIENCES
OF DISCRIMINATION.
PRAMS DATA COLLECTION PROCEDURE
ARE STANDARDIZED TO FACILITATE
COMPARISONS BETWEEN SITES FOR
SINGLE AND MULTI-SITE ANALYSES.
THEY'RE IN THE MODEL
SURVEILLANCE PROTOCOL YOU CAN
FIND ON THE CDC PRAMS WEBSITE.
PRAMS HAS A MAIL SURVEY WITH
MULTIPLE FOLLOW-UP ATTEMPTS SO
THERE'S UP TO THREE MAILED
SURVEYS AND TWO LETTER REMINDERS
AND A FOLLOW-UP IF THERE'S NO
MAIL RESPONSE.
AND FOR THE PHONE SURVEY,
INTERVIEWERS HAVE UP TO 15 CALL
ATTEMPT TO MAKE CONTACT WITH THE
PARTICIPANT.
FINALLY, WE HAVE PILOT TESTED
OUR THIRD MODE, THE WEB MODULE
WITH FIVE PRAMS SITES, MARYLAND,
PUERTO RICO, SOUTH CAROLINA,
VIRGINIA AND WYOMING.
WE HOPE TO GET ALL PRAM SITES BY
FALL OF 2023.
NOW THAT I'VE PRESENTED ON
DETAILS OF PRAMS LET'S LOOK AT
HOW IT MAY HAVE HELPED IN THE
FORMATION OF SOURCE.
A CASE CONTROL STUDY WAS DONE BY
THE COLLABORATIVE RESEARCH
NETWORK THAT IDENTIFIED
CHARACTERISTICS ASSOCIATED WITH
RACIAL ETHNIC DISPARITY AND
INTERPERSONAL AND ENVIRONMENTAL
STRESSORS.
SO THE 13 ITEMS SIGNIFICANT LIFE
EVENT SCALE OR SLE SCALE ALSO
CALLED OUR STRESSORS QUESTION
WAS USED.
IN 2012 TO 2013, EMORY
RESEARCHERS USED THE PRAMS
MET
METHODOLOGY OF A STILLBIRTH
STUDY FROM GEORGIA'S FETAL DEATH
CERTIFICATES.
IN TERMS OF FUNDING FOR SOURCE
PROJECT AS PART OF THE 2016 TO
2019 FUNDING CYCLE, CDC'S PRAMS
NOTICE OF FUNDING AWARD THEN
INCLUDED A NEW COMPONENT TO FUND
ONE PRAMS GRANTEE TO HAVE A
STILLBIRTH PILOT IN THEIR STATE
AND UTAH WAS THE SOLE RECIPIENT
AND WORKED TO CREATE THE SOARS
PROJECT.
AFTER DEVELOPMENT AND WORKING
THROUGH CHALLENGES WITH THE DATA
COLLECTION SYSTEM THE UTAH SOARS
WAS ABLE TO COLLECT DATA FROM
MAY 2018 TO JUNE 2019.
SOARS WAS NOT ABLE TO BE FUNDED
BY THE CDC BUT WAS FUNDED BY A
UTAH PRAMS PARTNER.
AND THEN AGAIN CDC DID OFFER THE
OPPORTUNITY FOR STILLBIRTH DATA
COLLECTION IN OUR CURRENT
FUNDING CYCLE BETWEEN THE YEARS
OF 2021 TO 2025 OF WHICH UTAH
WAS THE SOLE APPLICANT AND
RECIPIENT AND 2021 DATA HAS
COLLECTED AND 2022 IS IN
PROGRESS AND BOTH WILL BE
AVAILABLE IN THE FUTURE.
AND UTAH HAS BEEN ABLE TO HELP
OTHER STATES LIKE OHIO AND NORTH
DAKOTA NOT CURRENTLY FUND BY CDC
PRAMS TO CREATE THEIR OWN SBRJ
PROJECTS.
STILLBIRTH PROJECTS.
BOTH HAVE A PROTOCOL APPROVED BY
CDC AND IRB AND BOTH CONTACTED
PARTICIPANTS AFTER THE LIVE BORN
OR STILLBORN.
PRAMS PROVIDED INFORMATION FROM
A SAMPLE OF INDIVIDUALS WITH THE
LIVE BORN INFANT IN THE DATA
COLLECTION YEAR.
SOARS COMBINES INFORMATION FROM
ALL FETAL DEATHS OR CENSUS IN
THE DATA COLLECTION YEAR.
TO ENCOURAGE RESPONSES PRAMS
PROTOCOL ALLOWS AN INCENTIVE FOR
PARTICIPATION AND/OR REWARD UPON
COMPLETION.
SOARS PROTOCOL HAS A NECKLACE
WEDGE A PENDANT OF A SWALLOW IN
MEMORIAM OF THE LOST FETUS AND A
CONSULTATION WITH A FETAL
MATERNAL MEDICINE PART OF THE
STILLBIRTH COUNCIL.
BOTH PROJECTS OFFER INFORMED
CONSENT WITH SENSITIVE LANGUAGE
AND FOR SOARS THE INFORMED
CONSENT SENT TO THE SAMPLED MOMS
INCLUDE ADDITIONAL SENSITIVE
LANGUAGE THAT RECOGNIZES THE
DIFFICULTY AND SENSITIVITY OF
THEIR LOSS.
PRAMS HAS THREE MAILINGS OF THE
QUESTIONNAIRE PACKAGE WITH THE
PHONE FOLLOW-UP FOR
NON-RESPONDENTS OF UP TO 15 CALL
ATTEMPTS.
TO AVOID OVERWHELMING THE
PARTICIPANT WHO MAY STILL BE
GRIEVING, SOARS HAS TWO MAILINGS
AND A PHONE FOLLOW-UP FOR
NON-RESPONDENTS UP TO FIVE CALL
ATTEMPTS.
HERE ARE THE TOPICS COVERED BY
THE SOARS QUESTIONNAIRE.
PRENATAL AND POST NATAL CARE,
SOCIAL SUPPORT AND STRESS AND
BEREAVEMENT SUPPORT AND SUPPORT
FROM THE HOSPITALS AFTER A
STILLBIRTH OCCURS AND TESTS THAT
MAY HAVE BEEN OFFERED AFTER THE
STILLBIRTH, USE OF ALCOHOL,
TOBACCO AND E-CIGARETTES.
PHYSICAL ABUSE, CHRONIC HEALTH
CONDITIONS OF THE MOTHER AND
HEALTH INSURANCE COVERAGE.
A LITTLE MORE ABOUT SOARS.
THE SOARS PROGRAM USED A LOGO OF
A SWALLOW TO SYMBOLIZE HOPE FOR
NEW BEGINS.
THE SWALLOW WAS USED IN THE
PENDANT OF A NECKLACE DESIGN BY
A LOCAL UTAH ARTIST WITH A
CONNECTION TO PREGNANCY LOST.
THEY CHARGED UTAH FOR THE
SUPPLIES FOR THE FIRST TWO YEARS
OF THE PROJECT AND BEGINNING IN
YEAR THREE THEY WERE ABLE TO USE
A DIFFERENT LOCAL JEWELER ABLE
TO MEET THE BUDGETARY LIMITS.
THE IMPORTANCE OF THIS PENDANT
IS THAT IT HELPS MEMORIALIZE THE
LOST BABY.
THE ADVISORY COMMITTEE HAS BEEN
IMPORTANT TO THE SUCCESS OF
IMPLEMENTING UTAH SOARS.
THE ADVISORY COMMITTEE IS
COMPRISED OF THE GROUP OF
EXPERTS YOU SEE HERE INCLUDING
WOMEN WHO EXPERIENCED A FETAL
LOSS.
THIS IS CRITICAL TO ENSURING THE
VOICES OF THOSE THAT HAVE
EXPERIENCED A LOSS ARE EXCLUDED
IN THE CONSTRUCTION OF
STILLBIRTH STUDIES.
THE ADVISORY COMMITTEE HELPED IN
PARTNERS AND CONSULTATION WITH
THE SPECIALISTS REGARDING
POTENTIAL CAUSES OF THE LOSS AND
RISK OF THE FUTURE LOSS.
AND THIS HELPED PROVIDE ADVICE
ON THE SURVEY QUESTIONS WHICH
CAME FROM THE EMORY PILOT AND
PRAMS AS WELL.
HERE ARE A FEW SAMPLE QUESTIONS
FROM SOARS.
ON THE LEFT THERE'S A QUESTION
THAT ASKS ABOUT PROBLEMS
ENCOUNTERED DURING PREGNANCY.
AN OPTION J ASKED ABOUT
DECREASED FETAL MOVEMENT.
I REMEMBER THIS BEING A KEY
DISCUSSION POINT DURING THE
PARENT GROUP THAT SPOKE FROM THE
FIRST STILLBIRTH COUNCIL MEETING
AND QUESTIONS ABOUT THE OFFER
AND RECEIPT OF CERTAIN TESTS.
IN THE MIDDLE A QUESTION READS
WERE ANY TESTS OFFERED TO YOU
DURING YOUR HOSPITAL STAY.
YOU'LL NOTICE THAT OPTION C
SPECIFIED WHETHER AN AUTOPSY WAS
OFFERED.
THEN ON THE RIGHT QUESTION 54
READS WHAT WERE THE REASONS THE
AUTOPSY WAS NOT DONE TO GET TO
THE POSSIBLE REASONS FOR THE
LACK OF AN AUTOPSY.
THIS IS INFORMATION THAT CAN'T
BE GLEANED FROM A FETAL DEATH
CERTIFICATE.
HERE'S A FEW MORE QUESTIONS TO
THE PSYCHOSOCIAL ASPECT AND
QUESTION 50 ASKS ABOUT THE TYPE
OF SUPPORT SERVICES AT THE
HOSPITAL INCLUDING GRIEF
SUPPORT.
AND THEN ON THE RIGHT, A FEW
PRAMS QUESTIONS ON MENTAL HEALTH
CONDITIONS THAT THE MOTHER MAY
HAVE HAD DURING PREGNANCY.
THERE'S ALSO THE STRESSORS
QUESTION LIKE I MENTIONED BEFORE
THAT COULD ALSO BE CATEGORIZED
INTO SEOH INDICATORS.
FOR INSTANCE, HOUSING
INSECURITY, FINANCIAL INSECURITY
AND INCARCERATION EXPOSURE ARE
ALL ASPECTS OF SEOH PRESENT ON
THE SOAR SURVEY.
OTHER SOARS QUESTIONS NOT
PICTURED ASK ABOUT HEALTH CARE
ACCESS AND INSURANCE WHICH ARE
ALSO SDOH INDICATORS.
SO IN THE STUDY LED BY ANOTHER
MEMBER OF THIS COUNCIL WE LOOKED
AT WHETHER THE SOURCE PILOT WAS
FEASIBLE AMONG THE STILLBIRTH
POPULATION WITHIN AN EXISTING
PRAM SITE.
THERE WERE 288 UTAH RESIDENTS
THAT EXPERIENCED A STILLBIRTH.
THE SOURCE UNRELATED RESPONSE
RATE OF 58% WAS HIGHER THAN THE
2018 UTAH PRAMS RATE OF 54%.
AND MOST OF THE SOURCE
PARTICIPANTS RESPONDED BY MAIL
COMPARED WITH 68.3% OF THE
PARTICIPANTS IN THE 2018 UTAH
PRAMS SURVEY.
WOMEN OFTEN LIKE TO GET THE
PACKET IN THE MAIL AND THEY WERE
INTERESTED IN COMPLETING THE
SURVEY BUT NOT IN PERSON OR NOT
BY TELEPHONE.
THERE WERE A HIGHER PROPORTION
OF WOMEN NON-HISPANIC WHITE,
MARRIED AND HAD MORE THAN A HIGH
SCHOOL DIPLOMA THAT RESPONDED TO
THE SURVEY THAN WOMEN OF OTHER
RACES, ETHNICITIES AND WE FOUND
SIGNIFICANT DIFFERENCES BETWEEN
RESPONDERS AND NON-RESPONDERS BY
MATERNAL AGE, GESTATIONAL AGE OF
THE FETUS OR MONTH AND DELIVERY.
ITEM NON-RESPONSE WAS LOW AND
MOST WOMEN IN THE UTAH PROJECT
WERE WILLING TO RESPONSE TO THE
SURVEY QUESTIONS.
THE QUESTION ABOUT INCOME WHICH
TYPICALLY GETS US THE HIGHEST
ITEM NON-RESPONSE RATE IN PRAMS
HAD A SLIGHTLY LOWER RATE IN
SOARS THAN IN THE UTAH PRAMS
SURVEY AND SOARS WAS 14.8% AND
THE MOST SENSITIVE SURVEY
QUESTION HAS LOW ITEM NON
RESPONSE RATES ABOUT TESTS
OFFERED AND QUESTIONS ABOUT
TESTS PERFORMED.
THESE QUESTIONS WERE TYPICALLY
MORE SENSITIVE BUT THEN IN THE
UTAH SOURCE PROJECT WE FOUND
THAT THE ITEM NON-RESPONSE RATES
WERE FAIRLY LOW.
AND NON-RESPONSE AT THE
BEGINNING OF THE SURVEY DIDN'T
DIFFER AT THE END OF THE SURVEY
WHICH SUGGESTS THAT WOMEN
COMPLETED THE SURVEY ALL THE WAY
DREW.
-- THROUGH.
SO IN SHORT THE SOURCE PILOT IN
UTAH IS FEASIBLE FOR THIS
POPULATION OF WOMEN EXPERIENCING
STILLBIRTH TO PARTICIPATE IN.
HERE ARE PRELIMINARY DATA FROM
2018 TO 2019 FROM UTAH SOARS.
YOU CAN SEE BY THE LINK AT THE
BOTTOM, UTAH HAS RELEASED A
HEALTH STATUS UPDATE ON THE
SOURCE SOARS DATA AVAILABLE ON
THEIR WEBSITE.
THERE'S SOME KEY FINDINGS.
IF YOU LOOK ON THE LEFT OF YOUR
SCREEN, FIGURE 1 SHOWS THE
MAJORITY OF THE WOMEN RECEIVED
SOME TYPE OF SUPPORT GESTURE
AFTER THE STILLBIRTH.
FOR EXAMPLE, FOOTPRINT
IMPRESSION WERE ABLE TO HOLD THE
BABY.
SOME OF THE SOURCE RESULTS
INDICATED THE MAJORITY OF THE
WOMEN WERE GIVEN OPPORTUNITIES
TO ASK QUESTIONS AND FELT
ADEQUATELY SUPPORTED BY HOSPITAL
STAFF REGARDING THEIR BRIEF, 86%
TO 97% AND FEWER SAID THEY WERE
GIVEN INFORMATION ABOUT WHAT TO
DO WHEN THEIR BREAST MILK CAME
IN.
SOURCE RESULTS ALSO SHOW THAT
WHILE 24% OF THE WOMEN DID NOT
FEEL ADEQUATELY SUPPORTED BY
GRIEF COUNSELORS DURING THEIR
HOSPITAL STAY, MORE THAN HALF,
52% OF THE WOMEN WENT ON TO
PROCESS GRIEF COUNSELLING IN THE
EARLY MONTHS FOLLOWING THEIR
STILLBIRTH DELIVERY.
AND THEN LOOKING TO THE FAR
RIGHT A MAJORITY OF THE WOMEN
WHO DID NOT RECEIVE GRIEF
COUNSELLING SAID IT WAS BECAUSE
IT WAS NOT NEEDED AND OTHERS
SAID THEY WERE NOT YET READY FOR
IT.
13.7% OF THE WOMEN DIDN'T KNOW
WHERE TO GO TO GET IT.
SO IN CLOSING THERE'S A FEW NEXT
STEPS FOR CDC AND SOARS.
THEY ARE CONTINUED ANALYSIS OF
THE WEIGHTED DATA FROM YEAR 1.
THAT'S THE JUNE 2018 OF MAY 2019
DATA WE MENTIONED.
AND THEN WAITING FROM SUBSEQUENT
YEARS OF DATA COLLECTION FROM
2020 AND 2021.
WE ALSO LIKE TO TAKE ACCOUNT OF
THE SOARS SURVEY QUESTION MAY
NEED REVISION FOR FUTURE PHASES
OF THE SURVEY.
WE'D ALSO LIKE TO CONTINUE TO
OBSERVE PROGRESS WITH CHANGES IN
THE DATA COLLECTION SYSTEM THAT
IS USED WHERE RED CAP IS
CURRENTLY USED VERSUS EPI-INFO
AND THEN OF COURSE CONTINUED
DATA DISSEMINATION.
AND THEN ALSO YOU'VE LIKELY
NOTICED THERE'S JUST ONE SITE
ABLE TO BE FUNDED BY CDC FOR THE
SOURCE PROJECT.
AND WE HOPE TO EXPLORE
OPPORTUNITIES FOR OTHER PRAMS
SITES TO BE FUNDED WITH
STILLBIRTH STUDIES AS WELL.
CDC'S HEAR HER CAMPAIGN WAS
CREATED TO RAISE AWARENESS OF
URGENT MATERNAL WARNING SIGNS
DURING AND AFTER PREGNANCY AND
TO IMPROVE COMMUNICATION BETWEEN
THE PATIENTS AND THEIR HEALTH
CARE PROVIDERS AND THIS INCLUDES
FETAL MOVEMENT AS ONE OF THE
SIGNS AND SYMPTOMS THAT INDICATE
A NEED TO SEEK IMMEDIATE MEDICAL
CARE.
A SLOWING OR STOPPAGE IN
MOVEMENT MAY INDICATE FETAL
DISTRESS AND INFECTION OF THE
UTERUS OR NOT HAVING ENOUGH
AMNIOTIC FLUIDS.
SO RECOGNIZING THE URGENT
MATERNAL WARNING SIGNS, GETTING
AN ACCURATE AND TIMELY DIAGNOSIS
AND QUALITY CARE CAN SAVE LIVES
AND HEAR HER ENCOURAGES
PARTNERS, FRIENDS, FAMILY AND
HEALTH CARE PROVIDERS ANYONE WHO
SUPPORTS PREGNANT AND POSTPARTUM
PEOPLE TO LISTEN WHEN SHE SAYS
SOMETHING DOESN'T FEEL RIGHT.
A HEALTH CARE PROFESSIONAL CAN
AID AND HELP IN PATIENTS
UNDERSTAND THE URGENT MATERNAL
WARNING SIGNS AND WHEN TO SEEK
MEDICAL CARE RIGHT AWAY AND FOR
MORE INFORMATION ON THIS
CAMPAIGN, YOU CAN VISIT
CDC.gov/HEAR HER.
AND WITH THAT I'D LIKE TO
ACKNOWLEDGE MY COLLEAGUES WHO
HELP WITH THE PRESENTATION AS
WELL THE GROUP OF THE PARTNERS
LISTED ON THE SLIDE AND THANK
YOU FOR LISTENING AND ATTENDING
THIS PRESENTATION TODAY.
THANK YOU.
>>THANK YOU, DR. DIEKE.
I'M NOT SURE BASED ON THE
PRESENTATION INTRODUCTION THERE
WAS GOING TO BE SHARING OF DATA?
I WANT TO BE SURE I WAS NOT
CUTTING YOU OFF IN CASE THERE
WAS SOMETHING ELSE.
>>NO JUST FOR OBSERVATION OF
THE TIME WE WANTED TO KEEP THE
PRESENTATION RELATIVELY SHORT
AND HAVE AN OPPORTUNITY FOR
QUESTIONS AND ANSWERS.
>>WONDERFUL.
WE'RE GOING TO THE PANEL FOR THE
DISCUSSION AT THE END OF THE
FIRST SESSION.
SO THANK YOU FOR ALL THE
INSIGHTFUL WONDERFUL
PRESENTATION ALL THE WORK YOU'RE
DOING AND THE EXAMPLE YOU'RE
MAKING WITH THE SOARS IN UTAH.
IT'S A GOOD RESOURCE AND EXPAND
AND WE HAVE WILL HAVE QUESTIONS
FOR YOU BUT WE'LL KEEP IT FOR
WHEN WE GET TO THE PANEL.
THE NEXT PRESENTER IS DR. JOANNE
CACCIATORE AT THE WATTS COLLEGE
OF PUBLIC HEALTH AND WILL TALK
ABOUT PSYCHOLOGICAL IMPACT AND
TREATMENT.
THANK YOU SO MUCH FOR ACCEPTING
TO BE WITH US TODAY.
>>THANK YOU, EVERYONE FOR THE
INVITATION.
I'M GRATEFUL TO BE HERE AND
ENCOURAGED BY THESE KINDS OF
MEETINGS.
WOULD IT BE BETTER IF I DID A
SHARE SCREEN IT APPEARS SOME OF
MY FONTS DIDN'T TRANSLATE IN THE
E-MAIL.
I'M HAPPY TO DO A SHARE SCREEN
IF THAT CAN WORK.
THANK YOU.
I AM GOING TO BE TALKING
TODAY -- I'LL TRY TO MINIMIZE
THIS.
I'LL BE TALKING TODAY ABOUT THE
COLLISION OF BIRTH AND DEATH.
THAT'S ONE OF THE UNIQUE ASPECTS
OF THE DEATH OF A BABY THAT I
THINK A LOT OF GRIEVING PARENTS
WITH WHO I WORK STRUGGLE WITH
AND A LITTLE BIT ABOUT ME
BRIEFLY.
I'M A PROFESSOR AT ARIZONA STATE
UNIVERSITY.
I DON'T JUST STUDY PERINATAL
DEATH, I STUDY GRIEF AND PART OF
THE MISS FOUNDATION AND PROVIDE
AID TO FAMILIES WHO'S CHILDREN
ARE DYING FROM ANY AGE OR CAUSE.
WE'VE BEEN AROUND MORE THAN A
QUARTER OF A CENTURY AND IT HAS
CULMINATED IN THE RECENT
FORMATION OF WHAT YOU MAY HAVE
SEEN IN PRINCE HARRY AND OPRAH
WINFREY'S SERIES THE ME YOU
CAN'T SEE AND SO I'M GOING TO
TALK A LITTLE BIT ABOUT NOT JUST
MY RESEARCH BUT MY PRACTICE IN
MORE THAN A QUARTER OF A CENTURY
AND ALSO THE MOTHER OF A BABY
WHO DIED DURING BIRTH IN 1994.
SO A SIMPLE CHILD WHO LIGHTLY
DRAWS HIS BREATH AND FEELS HIS
LIFE IN EVERY LIMB, WHAT SHOULD
WE KNOW OF DEATH?
SOME OF THE DEFINING AND UNIQUE
EXPERIENCES OF THE DEATH OF A
BABY INCLUDE MANY THINGS.
WE'D BE HERE LONGER THAN 30
MINUTES AND I'LL TOUCH ON THE
KEY PARTS OF MY RESEARCH I THINK
WILL BE MOST USING FOR MOST
ATTENDING TODAY.
WE'LL COVER A LITTLE BIT ABOUT
THE PSYCHOLOGICAL AND EMOTIONAL,
THE SOCIAL AND INTERPERSONAL AND
ECONOMIC AND EXISTENTIAL AND
SPIRITUAL AS WELL AS THE
PHYSICAL BECAUSE THE DEATH OF A
BABY DURING BIRTH OR BEFORE
BIRTH IS AN INCREDIBLY PHYSICAL
AND SOMATIC EXPERIENCE.
FROM THE WRITER, ADRIAN RICH,
PROBABLY THERE IS NOTHING IN
NATURE MORE RESONANT WITH
CHARGES THAN THE FLOW OF ENERGY
BETWEEN TWO BIOLOGICALLY ALIKE
BODIES ONE OF WHICH GLEANED IN
AMNIOTIC BLISS AND ONE LABORED
TO GIVE BIRTH TO THE OTHER.
THE MATERIALS ARE HERE FOR THE
DEEPEST MUTUALITY AND PAINFUL
ESTRANGEMENT.
IN TERMS OF THE PSYCHOLOGICAL
AND EMOTIONAL EFFECTS.
IN MY RESEARCH IN TRAUMATIC
GRIEF, DEFINITELY WOMEN WHO
EXPERIENCE PERINATAL DEATH, THE
DEATH OF A BABY TO STILLBIRTH
HAVE THE CHARACTERISTICS OF
TRAUMATIC GRIEF WHICH OVERLAPS
WITH POSTTRAUMATIC GRIEF AND WE
HAVE SEEN THIS AND THE
CHARACTERISTICS OF WHAT IS
TRAUMATIC GRIEF AND THE LOSS IS
USUALLY SUDDEN AND UNEXPECTED
AND THE BRIEFING PERSON FEELS
OUT OF CONTROL.
AT THE RESULT OF ALL TRAUMA
INCLUDES THE EMOTIONS OF FEAR
AND CAN REACH THE THRESHOLD OF
TERROR AND WHAT I HEAR FROM
WOMEN WHOSE BABIES DIE AND WHEN
THE OUTCOME IS THE DEATH OF YOUR
BABY IT'S A LEVEL OF TERROR THAT
IS INEXPLICABLE AND FEAR AND
TERROR BECOME CORE EMOTIONAL
EXPERIENCES OF THE DEATH OF A
BABY.
ALSO CHALLENGES TO CORE IDENTITY
ARE COMMON AMONGST PEOPLE WHO
HAVE TRAUMATIC GRIEF.
AND FOR PEOPLE WHO LOSE THEIR
CHILDREN, THEIR BABIES, THIS IS
AN ABSOLUTE CHALLENGE TO THEIR
CORE IDENTITY.
IN PARTICULAR I HAVE A HEART FOR
MOTHERS WHO LOSE THEIR FIRST
CHILD OR ONLY CHILD IN PERINATAL
DEATH BECAUSE THE QUESTION IS AM
I STILL A MOTHER, AM I STILL A
FATHER?
IN SIBLINGS THIS CAN APPLY TO
SIBLINGS AS WELL BUT THE
CHALLENGE TO CORE IDENTITY IS
REALLY IMPORTANT BECAUSE
ESPECIALLY FOR PARENTS WHO LOSE
THEIR ONLY CHILD, OTHER PEOPLE
IN THE WORLD DO NOT SEE THEM AS
A PARENT AND YET THEY HAVE TO
FIGURE OUT HOW TO PARENT A CHILD
WHO HAS DIED.
THERE CAN BE SOME REAL CORE
CHALLENGES.
AND FOR THE MOTHER THAT INCLUDES
PHYSICAL CHALLENGES FOR THE
BIRTHING PARENT THAT INCLUDES
PHYSICAL CHALLENGES INCLUDING
ONGOING BREAST MILK, INCLUDING
MATERNAL HORMONES PUMPING
THROUGH HER BLOODSTREAM AND
PEOPLE ASKING HER IN PUBLIC
SPHERES, HOW IS YOUR BABY,
WHERE'S YOUR BABY AND HER
REPEATEDLY HAVING TO TELL PEOPLE
HER BABY DIED AND BE MET WITH A
RELATIVELY UNSYMPATHETIC
RESPONSE OF THE WORLD.
THERE WAS THE IDEA OF THE
SHATTERED WORLD ASSUMPTION.
THERE'S A SHATTERING OF THE
WORLD ASSUMPTIONS WHEN SOMEONE'S
CHILD DIES BECAUSE WE ASSUME
WE'LL OUTLIVE OUR CHILD.
PARTICULARLY BABIES.
WE DON'T IMAGINE THEY'LL DIE IN
TODAY'S WORLD.
THERE'S A RETICENCE TO TALK
ABOUT THIS.
THIS IS ONGOING AND WORKING WITH
PEOPLE YOUNGER MOTHERS COMING IN
AND FATHERS COMING IN WHEN THEY
TALK ABOUT THE DEATH OF THEIR
BABY, OFTEN IT DOESN'T INCLUDE,
YES WE HAD A CONVERSATION ABOUT
THE DEATH OF THE BABY AND KICK
COUNTS.
IT'S STILL PART OF THE
PSYCHOSOCIAL CARING OF PREGNANT
FAMILIES.
AND GUILT, REGRET, FEAR, SHAME
AND STIGMA IN MOTHERS AND
FATHERS.
GUILT IS VERY BIG.
THIS IDEA OF JUDAS BABY AND THE
MOTHER'S GUILT AND WHEN THE BABY
DOESN'T COME HOME ALL EYES TURN
TO MOM AND THE LAST MONTH
THEY'RE ASKING ARE YOU STRATEGY
BRAXTON HICKS CONTRACTIONS AND
EVERYBODY'S EXCITED FOR HER TO
BRING THE BABY HOME AND DOESN'T
GET TO BRING THE BABY HOME IT'S
A COMPLEX BLEND OF SHAME AND
GUILT FOR MANY MOTHERS WITH WHOM
I WORK.
IN ADDITION, BOTH PARENTS OFTEN
EXPRESS TO ME THEY HAVE A LOT OF
REGRETS.
THEY REGRET CERTAIN DECISION
CARE, IF THEY HAVE CHOSEN AN AT
HOME BIRTH THEY REGRET AN AT
HOME BIRTH AND IF THEY CHOSE A
HOSPITAL BIRTH THEY ARE REGRET
THAT.
I PUBLISHED A STUDY ON
RUMINATION AND TRAUMATIC GRIEF.
RUMINATION IS QUITE COMMON AMONG
PEOPLE WHO HAVE EXPERIENCED
TRAUMATIC GRIEF.
WE KNOW STIGMA IS BIG ESPECIALLY
IN STILLBIRTH AND PERINATAL AND
THEY BELIEVE JUST BECAUSE YOURY
DIES BEFORE BIRTH YOU'LL HAVE A
LESSER GRIEF REACTION.
IT'S LESS SIGNIFICANT THAN THE
DEATH OF A BABY 1 YEAR OR 10
YEARS OLD AND THERE'S A STIGMA
AND OFTEN THEY ARE NOT IN
AGREEMENT WITH THOSE FEELINGS
AND YET THEY'RE FEELING IT FROM
EVEN CLOSE FAMILY MEMBERS.
IT COULD BE VERY ISOLATING AND
THAT CAN RESULT IN SOCIAL
WITHDRAW WHICH IS
UNDERSTANDABLE.
AND ANGER AND JEALOUSY AND
WANTING TO DIE TO BE WITH THE
BABY AND THINK OF HORMONES AND
HOW POWERFUL THEY CAN BE AS THEY
PUMP THROUGH YOUR BLOODSTREAM
AND I'VE HAD THOSE FEELINGS AS
WELL AND IN PARTICULAR MOTHERS
BUT ALSO SOMETIMES FATHERS
EXPRESS THIS TO ME.
THEY ARE RETICENT TO SHARE IT
WITH OTHER PEOPLE BECAUSE
THEY'RE AFRAID OF BEING
HOSPITALIZED OR AFRAID THAT
PEOPLE WILL THINK THEY'RE NOT
OKAY.
SO ANGER, JEALOUSY ALSO CAN
HAPPEN.
ANGER CAN SOMETIMES BE
MISDIRECTED AT VARIOUS PEOPLE
AND SOMETIMES IT CAN BE DIRECTED
AT PEOPLE WHO PARENTS MAY FEEL
ARE RESPONSIBLE IN SOME WAY
INCLUDING THEMSELVES.
JEALOUSY OF OTHER BABIES THAT
LIVED AND I WORK RIGHT NOW WITH
A FAMILY AND THIS MOTHER LOST
HER BABY AT FULL TERM AND HER
SISTER WAS PREGNANT THE SAME
TIME AND TWO WEEKS AFTER HER
BABY DIED, HER SISTER'S BABY WAS
BORN AND WANTS TO BE A GOOD AUNT
TO HER NIECE BUT IS VERY JEALOUS
AND FEELS VERY OVERWHELMED IN
HER PRESENCE AND HAS WITHDRAWN
AND OUR WORK TOGETHER IS ABOUT
HELPING HER TO DEVELOP A GOOD
HONEST WAY TO TALK TO HER SISTER
ABOUT IT TO TALK ABOUT HER PAIN
AND TO BE ABLE TO RE-INTEGRATE
WITH HER SISTER AND HER NIECE.
SOCIAL AND INTERPERSONAL AND
THERE COULD BE MARITAL CONFLICT
AND THERE'S A HIGHER RISK OF
MARITAL DISSOLUTION AND
MISCARRIAGE DOES NOT INCREASE
THE RISK OF MARITAL DISSOLUTION
BUT THE DEATH OF A BABY IN
PERINATAL DEATH OR OLDER CHILD
DID INCREASE THE RISK OF
MARRIAGE DISSOLUTION.
THERE'S IMPACT ON SURVIVING
SUBSEQUENTLY BORN CHILDREN.
I IN PARTICULAR WRITE ABOUT
INTERGENERATIONAL TRAUMA AND
PERINATAL TOGETHER AND OTHER
LOSSES AND TRAUMAS BUT IT CAN
AFFECT PARENTING STYLE AND GRIEF
AND COPING OF THE OTHER
CHILDREN.
HOW THE OTHER CHILDREN COPE WITH
THEIR GRIEF AND COMMUNICATE
THEIR GRIEF OFTEN DEPENDS ON
THEIR FAMILY OF ORIGIN.
IT OFTEN DEPENDS ON THE PARENT'S
STYLE.
IT CAN IMPACT THE SIBLING'S ROLE
ADJUSTMENT IF THE OLDEST CHILD
DIED DURING BIRTH OR BEFORE
BIRTH AND PARENTS GO ON AND HAVE
ANOTHER CHILD, IS THIS THE FIRST
CHILD THE OLDEST CHILD.
THAT CAN BE A ROLE ADJUSTMENT
PARTICULARLY IF IT'S NOT WELL
INTEGRATED AND WELL COMMUNITY
AND THE FAMILY DOESN'T HAVE A
LOT OF GOOD SOCIAL SUPPORT
AROUND HOW TO COMMUNICATE AND
PROCESS GRIEF WITH SURVIVING
SUBSEQUENTLY BORN CHILDREN.
AND IMPACTING ON SURVIVING
SUBSEQUENTLY BORN CHILDREN AS IT
BECOMES TO RITUAL PRACTICES AND
INTEGRATION LATER.
AS THE SUBSEQUENTLY BORN
CHILDREN AGE OR SURVIVING
CHILDREN AGE, WHAT DOES IT MEAN
TO THEM IF THEY'RE 5 WHEN THEIR
SIBLING IS STILLBORN WHAT'S IT
MEAN TO THEM WHEN THEY'RE 18 OR
30 OR HAVE THEIR OWN CHILD?
I HAVE WORKED WITH PEOPLE WHO AS
A YOUNG CHILD EXPERIENCED THE
DEATH OF A SIBLING TO STILLBIRTH
AND I CAN TELL YOU IT ABSOLUTELY
AFFECTS THEIR SOCIAL, EMOTIONAL
STATE EVEN 30 YEARS LATER.
THEN THE RISKS OF SOCIAL
CONSTRAINTS AND SOCIAL
WITHDRAWAL WHICH I'LL TALK A
LITTLE BIT MORE IN A MINUTE.
BUT ONE OF THE INTERESTING
STUDIES I WANT TO TELL BUT IS
ONE BY VANESSA JUTH IS POOR
PHYSICAL OUTCOMES IN BEREAVEMENT
WERE THE MOST SALIENT PREDICTORS
SOCIAL CONSTRAINT THE MOST --
EXCUSE ME, POOR PHYSICAL AND
PSYCHOLOGICAL OUTCOMES.
SOCIAL CONSTRAINTS BEING, AREN'T
YOU OVER IT YET, PRESSURE TO
MOVE ON AND PRESSURE TO FORGET.
IT BECOMES A CYCLE BECAUSE
BRIEFING PARENTS GO OUT IN THE
WORLD AND THEY'RE TRYING TO
INTEGRATE THEIR LOSS AND TRYING
TO TALK ABOUT IT BUT PEOPLE ARE
SAYING AREN'T YOU OVER IT YET?
YOU SHOULD FEEL BETTER BY NOW,
YOU'RE GOING TO HURT YOUR OTHER
CHILDREN.
YOU'RE GOING TO LOSE YOUR JOB AT
WORK AND SOME OF THESE THINGS
MAY BE TRUE.
THE PROBLEM IS THESE KINDS OF
SOCIAL CONSTRAINTS BY OTHERS
RESULTED IN POORER PSYCHOLOGICAL
AND PHYSICAL HEALTH OUTCOMES
WHICH IS SIGNIFICANT.
AND OF COURSE MY VANTAGE POINT
IS WE NEED BETTER PEDAGOGICAL
MODELS TO TEACH SCHOOLS AND
CHURCHES AND NEIGHBORHOODS AND
COMMUNITIES BETTER GRIEF SUPPORT
STRATEGIES WE'LL GET TO LATER.
THIS IS THE LONG-TERM
PSYCHOLOGICAL AN
INTERGENERATIONAL AFFECTS.
10% OF PEOPLE REMAIN OFF WORK
FOR 6 MONTHS AFTER STILLBIRTH
FROM THE LANCET SERIES AND
ECONOMISTS AND I DID AN ANALYSIS
OWN THE ECONOMIC BURDEN OF CHILD
DEATH AND THIS WAS CONSERVATIVE
NUMBERS WE FOUND $1.6 BILLION.
WE USED EVERY MOST CONSERVATIVE
NUMBER, $1.6 BILLION PER YEAR
AND I WOULD VENTURE TO GUESS IF
WE USED MODERATE ECONOMIC
NUMBERS IT WOULD HAVE BEEN
SIGNIFICANTLY, SIGNIFICANTLY
HIGHER THAN THAT.
WE KNOW THERE ARE ECONOMIC
IMPACTS AS WELL.
THE ECONOMIC IMPACTS AREN'T JUST
IN CAREER AND JOB PLACEMENT,
IT'S IN PSYCHOLOGICAL, EMOTIONAL
AND MENTAL HEALTH.
IN TERMS OF EXISTENTIAL AND
SPIRITUAL, FIRST THE DEATH OF A
BABY, ESPECIALLY SO EARLY LIKE
GOING BACK TO THE ADRIAN RICH
QUOTE THE MATERIALS ARE HERE FOR
THE DEEPEST MUTUALITY AND A PART
OF YOU DIES AND EVERYTHING IN
YOUR BODY IS WIRED TO NURTURE
AND CARE FOR THIS BABY WHO HAS
NOW DIED AND WHERE DO YOU PUT
ALL THAT MATERNAL, PATERNAL
ENERGY?
YOU HAVE NOWHERE TO PUT THIS.
IT'S AN INCREDIBLE CHALLENGE TO
OUR EXISTENTIAL STATE.
IT CAN CREATE CHALLENGES TO
FAITH STRUCTURE.
IN ONE STUDY THE VAST MAJORITY
OF PEOPLE LEFT THEIR CHURCH HOME
BECAUSE OF A LACK OF
RESPONSIVENESS FROM THEIR
SPIRITUAL.
THERE CAN BE A COLLAPSED SENSE
OF THE TRUST IN THEMSELVES
PARTICULARLY I HEAR THIS IN
MOTHERS IN PEOPLE WHO GIVE BIRTH
TO BABIES BECAUSE THEY TRUSTED
THEIR BODY TO DO THE RIGHT THING
AND CREATES AN ACRIMONIOUS
RELATIONSHIP LIKE WHAT DID MY
BODY DO WRONG.
AS A THERAPIST AND COUNSELOR
IT'S IMPORTANT FOR PEOPLE TO
PROVIDE THAT KIND OF SUPPORT
WHERE THEY FEEL SAFE TO TALK
ABOUT THAT WITHOUT IT BEING
DISMISSED AS IT WASN'T YOUR
FAULT FLIPPANTLY AND IT'S LIKELY
IT'S NOT SOMETHING MOTHER DID
AND WE KNOW THAT AND IT'S
IMPORTANT TO TALK ABOUT THEM IN
A SAFE WAY OTHERWISE SHE HAS
THEM AND CAN'T SPEAK THEM.
IT'S A UNIQUE MOMENT WITH BIRTH
AND DEATH COALESCING TO ONE
MOMENT AND THERE'S THE
RELATIONSHIP I SPOKE ABOUT WITH
HER BODY AND THE IMAGE OF A
WOMAN REACHING DOWN TO BRING HER
BABY ON HER BREAST AT THE MOMENT
OF BIRTH IS A POWERFUL ONE.
IT REALLY TRULY IS.
IT'S ONE OF THE MOST SEMINOLE
EXPERIENCES OF A HUMAN BEINGS
LIFE, ANY MAMMAL, REALLY, THE
DAY SHE GAVE BIRTH AND EVERY
CELL OF HERS KNOWS AND PAIN
KNOWN MORE INTENSELY SHE'S
EXULTANT AND KNOWS THE
EXPERIENCE OF GIVING BIRTH IS
EMPOWERING AND NOW IMAGINE DEATH
ENTERS HERE AND WE GET THE
EXISTENTIAL CONUNDRUM PARENTS
FACE AFTER THE DEATH OF THEIR
BABY.
THIS IS FROM A BOOK CALLED TOUCH
BY ASHLEY MONTEGUE AND THERE'S A
REASSURANCE FROM THE MOTHER LIES
IN THE SIGHT OF THE BABY AND ITS
FIRST CRY AND CLOSENESS TO HER
BODY.
THERE'S BIRTH BY ITSELF IS SUCH
A BIOLOGICAL PHYSICAL EXPERIENCE
NOT JUST SPIRITUAL BUT PHYSICAL.
ALL EYES ARE TURNED TOWARDS HER
WAITING FOR THAT BABY.
THERE ARE A SERIES OF COMPLEX
BIOLOGICAL THINGS THAT HAPPEN
AFTER BIRTH WHETHER OR NOT THE
BABY LIVES.
THIS CAN BRING FEAR AND NEGATIVE
COGNITION AS WELL AS A STATE OF
PAIN.
BOTH OF WHICH PREDICT
POSTTRAUMATIC STRESS.
IMAGINE WHEN THE BABY DIES THAT
THAT FEAR AND NEGATIVE COGNITION
AND THE PAIN COMBINED INCREASE
THE RISK OF TRAUMATIC STRESS
SYMPTOMS.
THE MATERNAL HORMONES ARE
PUMPING THROUGH HER BLOODSTREAM
TELLING HER FEED YOUR BABY,
NURTURE YOUR BABY AND YET
THERE'S NO BABY TO CARE FOR.
FOR MANY WOMEN BREAST MILK AND
THE HOME MILIEU HAS BEEN SET UP
TO WELCOME A BABY.
YOU HAVE A NURSERY, PEOPLE GO TO
THE HOSPITAL SOMETIMES ANTE
PARTUM AND GO TO THE HOSPITAL
WITH A CAR SEAT IN THEIR CAR AND
PEOPLE ARE WAITING FOR THEM TO
MAKE THE BIRTH ANNOUNCEMENT,
INSTEAD THEY HAVE TO TELL PEOPLE
THEIR BABY DIED.
THIS BRINGS A PHYSICAL PAIN FROM
THE EMOTIONAL PAIN.
LITERALLY YOU CAN FEEL -- MANY
ON THE CALL PROBABLY HAD OR HAVE
PERHAPS HAD SOME TRAUMATIC GRIEF
LOSS AND REMEMBER TRAUMATIC
GRIEVING IS A PHYSICAL
EXPERIENCE.
YOU CAN FEEL THE PAIN.
I USED TO SAY AFTER MY DAUGHTER
DIED I USED TO SAY MY BODY HURTS
FROM THE TIP OF MY HAIR TO MY
TOES AND WHERE THEY OVERLAP IT'S
MORE INTENSE.
SO LET'S TALK FOR A FEW MINUTES
ABOUT WHAT HELPS AND WHAT
DOESN'T HELP.
LET'S TALK ABOUT WHAT DOESN'T
HELP FIRST.
INSENSITIVITY, OBVIOUSLY AND
LACK OF COMPASSION AND CARE.
I SEE THIS ALL THE TIME.
I SEE IT FROM THE CRISIS CARE IN
THE HOSPITAL AND HEAR IT FROM
FAMILIES IN THERAPY WHO HAVE
TRIED MANY THERAPISTS AND THE
THERAPISTS DO NOT UNDERSTAND
TRAUMATIC GRIEF.
THE WOMAN I WAS TELLING WHO I'M
WORKING WITH RECENTLY WHOSE BABY
DIED AT TERM HER THERAPIST
SUGGESTED HE ADOPT A CHILD.
THERE'S A LACK OF UNDERSTANDING
ABOUT TRAUMATIC GRIEF.
THE VERNACULAR THE WAY WE DON'T
TOUCH A PREGNANT WOMAN'S BODY
AND ASK WHEN HER FETUS IS DUE IS
BECAUSE IT SOUNDS LIKE AN
INSENSITIVE WORD.
WHEN A NURSE AT HAY DID THE --
AT A HOSPITAL SAYS DO YOU WANT
TO HOLD YOUR FETUS AND IT'S
INCENSENSITIVE AND PEOPLE WANT
PEOPLE TO TALK TO THEM IN A WAY
THAT'S SENSITIVE AND GENTLE AND
WE NEED BETTER PEDAGOGICAL
MODELS.
THERE'S A FAILURE TO ACKNOWLEDGE
THE BABY'S DEATH AS WORTHY.
IT'S CONSISTENT.
IN THE RESEARCH IN THE '70s AND
'80s STILLBIRTH WAS IN ABORTION
AND MISCARRIAGE AND STILLBIRTH.
WHAT I FOUND IN MY PRACTICE IN
WORKING WITH BRIEFING PARENTS
THEY GENERALLY IT'S NOT THEIR
VIEW OF THEIR BABY AND THEY
DON'T APPRECIATE BEING LUMPED IN
WITH ABORTION FOR EXAMPLE.
WHATEVER POLITICAL POSITION
DOESN'T SEEM TO MATTER IN MY
CLINICAL WORK.
THE DEATH OF A BABY DURING OR
BEFORE BIRTH CAN BE AS IMPACTFUL
FOR MANY FAMILIES AS THE DEATH
OF AN OLDER CHILD.
THEY WANT PEOPLE TO ACKNOWLEDGE
THIS CHILD'S LIFE IS AS WORTHY
OF GRIEF AS ANY CHILD'S DEATH.
THEN THERE'S GENERAL GRIEF THAT
AFFECTS US ALL BECAUSE IF WE
LOVE AT SOME POINT WE'LL
EXPERIENCE GRIEF IF WE HAVEN'T
YET AND THERE ARE PLENTY OF
GOING AROUND AND SOCIAL
PLATITUDES AND THE MARGINALIZED
AND DISENFRANCHISED KIND OF
GRIEF ARE MET WITH PLATITUDES.
AT LEAST YOUR CHILD OLDER.
AT LEAST YOU DIDN'T BRING HER
HOME.
AREN'T YOU GLAD SHE DIED AS A
BABY.
GOD NEEDED AN ANGEL TO TEND.
THAT MAKES MOMENT ANGRY ABOUT
GOD ANYTHING AND THIS DOESN'T
HELP.
PRESSURE TO MOVE ON DOESN'T HELP
WHICH ALL GRIEVING PEOPLE GET.
IT'S PART OF MY IMPORTANT WORK
IN THE WORLD IS TRYING TO TEACH
THE GENERAL PUBLIC ABOUT GRIEF.
OTHERS ATTEMPTING TO FIND
MEANING IN THEIR LOSS.
THIS COMES WITH HELPFUL
RESPONSES AND ONE OF THE MOST
UNHELPFUL THINGS IS WHEN THEIR
COUNSELORS TRIED TO FIND MEANING
IN THEIR LOSS.
PARENTS THEMSELVES MIGHT TRY
THAT BUT DON'T LIKE OTHERS DO
THAT FOR THEM AND WE LOOKED AT
LONG COMPLICATED GRIEF DISORDER
AND WE FOUND THE MAJORITY OF
BRIEFING PARENTS DOES NOT
APPRECIATE WHEN PEOPLE DIAGNOSED
THEIR GRIEF AS PATHOLOGICAL.
WE KNOW PARENTS FACE ENDURING
AND LASTING SYMPTOMS AND TO
PATHOLOGIZE THAT WAS NOT
EXPERIENCED AS HELPFUL.
WHAT DOES HELP?
THIS IS NOT AN EXHAUSTIVE LIST
HAVING UNRUSHED TIME WITH THEIR
BABY.
SOME STATES ALSO ALLOW AND
ENCOURAGE FAMILIES TO TAKE THEIR
BABIES HOME ESPECIALLY IF THEY
CAN HAVE HOME FUNERALS AND
THERE'S NOW DEATH DOULAS AND
MOST STATES ALLOW THIS.
EMOTIONAL ARTIFACTS HELP AND
COMPASSIONATE AND WARM HOSPITAL
PROVIDER NEAR THEIR SIDE.
I ALSO ENCOURAGE AND TEACHING IN
ROUNDS I ENCOURAGE HAVING A
SINGLE POINT OF CONTACT FOR THE
PARENTS FOR POST CARE AND
ENSURING STAFF AT THE HOSPITAL
KNOW HOW TO CARE FOR PEOPLE
WHO'S BABY HAS JUST DIED MAKING
SURE ANYONE WHO GOES IN THE
ROOM, HOSPITALS ARE DOING THIS
NOW AND PUTTING NOTES ON THE
DOORS.
THIS IS HELPFUL.
OFFERING IN HOME RITUAL AND THE
TRADITIONAL RITUAL OF FUNERAL
CAN BE HELP FUL AND COLLECTING
THE WRISTBAND OR ANYTHING THEY
CAN ASSOCIATE WITH THE BABY ARE
ALL IMPORTANT BUT IN THE ABSENCE
OF A WARM PRESENCE OF A LOVING
PROVIDER, IT CAN FEEL VERY
LONELY AND TERRIFYING AND PEOPLE
DON'T ALWAYS MAKE DECISIONS
BASED IN LOVE WHEN THEY'RE SO
AFRAID AND ENCUMBERED BY FEAR OR
TERROR AND THE ACCOMPANIMENT OF
ONE CONTACT CAN HELP.
I OFTEN TEACH HOSPITAL TO SEND
CARDS CARDS ARE TANGIBLE.
ENSURING A GOOD COMMUNICATION
WITH SENSITIVE LANGUAGE AND GOOD
TRAUMATIC GRIEF-INFORMED
COUNSELLING.
THIS IS NOT EASY TO FIND BECAUSE
THERE AREN'T I'M A PROFESSOR IN
SCHOOL SOCIAL WORK AND A LOT OF
STUDENTS COME TO MY TRAUMATIC
GRIEF CLASS NOT KNOWING THE
FIRST THING ABOUT KNOWING HOW TO
COUNSEL IN TRAUMATIC GRIEF.
HAVING A GOOD LIST IS HELPFUL.
SUPPORT GROUPS IN THE RESEARCH
CAN BE HELPFUL.
MINDFULNESS-BASED INTERVENTIONS
AND MINDFUL WALKING AND
MEDICATION WHEN PEOPLE ARE READY
FOR IT AND YOGA.
THIS CAME FROM AN NIH GRANT WE
FOUND YOGA CAN BE A VERY
EFFECTIVE INTERVENTION FOR
STILLBIRTH.
AND FINALLY EMOTIONAL SUPPORT
FROM MULTIPLE SOURCE.
I'LL TELL YOU ABOUT A STUDY WE
DID AND WE LOOKED AT A LARGE
SAMPLE.
WE LOOKED AT WHAT GOOD GRIEF
SUPPORT WAS AND OVERWHELMINGLY
BASED ON HOUSES, FOUR TYPES OF
SOCIAL SUPPORT.
WE CATEGORIZED THE RESPONSES
INTO ONE OF THE FOUR CATEGORIES
OF HOW'S THE SOCIAL SUPPORT AND
OVERWHELMINGLY EMOTIONAL SUPPORT
AND ACTS OF EMOTIONAL CARES WERE
THE MOST DOMINANT THEMES.
REMEMBERING THE PERSON WHO DIED,
SAYING THEIR NAME, EMOTIONALLY
SUPPORTIVE COMMUNICATION AND
BEING AVAILABLE AND GIVING TIME
AND BEING OPEN TO HEARING ABOUT
PEOPLE'S GRIEF, NOT TRYING TO
FIX OR RUSH AND INSTRUMENTAL
SUPPORT CAME IN AT HIGH AND
APPRAISAL SUPPORT BUT EMOTIONAL
SUPPORT OVERWHELMINGLY.
INSTRUMENTAL SUPPORT IS LIKE
ASSISTANCE WITH CHILDCARE AND
MEALS AND FINANCIAL SUPPORT AND
APPRAISAL SUPPORT IS SIMILAR TO
WHAT PARENTS GET IN SUPPORT
GROUPS AND EXTENDED COMMUNITIES
WHICH IS CONNECTION WITH LIKE
OTHERS.
WE WANTED TO KNOW WHAT WERE THE
ACTIONS OF GOOD GRIEF SUPPORT
FROM GRIEVERS AND WHO WERE THE
ACTORS.
WE KNOW THE ACTIONS AND FOCUS ON
GRIEF SUPPORT THROUGH EMOTIONAL
SUPPORT.
THE BEST SOURCES ACCORDING TO
GRIEVERS, ANIMALS CAME IN AT
89%.
AND THIS IS COMPLETELY WITHOUT
WORDS.
I THINK THIS HAS TO DO WITH
PEOPLE PREFERRING EMOTIONAL
SUPPORT.
NEIGHBORS AND COMMUNITY CAME IN
AT 31% AND COLLEAGUES CAME IN
LOW AT 32% AND FAITH LEADERS AT
40%.
FAMILY AT 41% AND COUNSELORS AT
UNDER 60% WHICH IS DISAPPOINTING
FOR ME SINCE I WORK IN A SCHOOL
OF SOCIAL WORK AND GRIEF SUPPORT
GROUPS CAME IN BELOW PETS AND
ANIMALS.
I NEEDED TO UNDERSTAND WHY THIS
WAS SO WE EXTENDED OUR IRB AND
ASKED THE PEOPLE WHO RATED
ANIMALS SO HIGH WHY.
AND THIS IS WHAT WE FOUND.
THE NATURE OF THEIR RESPONSE WAS
NON-JUDGMENTAL AND THEY DID NOT
NEED TO TALK OR EXPRESS
PLATITUDE OR MAKING PEOPLE FEEL
BETTER TELLING THEM IT WAS GOD'S
WILL.
THEY APPROACHED THE GRIEVING
PERSON AND PROVIDED TACTILE
COMFORT AND WERE WITNESSES OF
THEIR GRIEF AND PROVIDED REFUGE
FROM LONELINESS AND ISOLATION.
I SEE THIS IN TRAUMATIC GRIEF.
TWO OF THE MOST COMMON
EXPERIENCES, DIFFICULT
EXPERIENCES WITH A FAMILIES IN
TERMS OF THE SOCIAL INTERACTION
IS FEELING OF LONELINESS AND
FEAR OF OTHERS AND FEAR OF WHAT
OTHERS WILL SAY OR TREAT THEM OR
THEIR GRIEF.
AND THAT ANIMALS PROVIDE A
REFUGE FROM THAT.
MUTUALITY AND CONNECTION AND
HAVING A CARE GIVING IDENTITY.
THIS WAS INTERESTING TO ME.
I DID NOT EXPECT THESE RESULTS
AND I DID NOT EXPECT THEM BUT IT
SHOWED ME HOW IMPORTANT BRIEF
SUPPORT IS IN JUST BEING THERE.
AND THAT THERE IS NO FIX.
ANIMALS DON'T TRY TO FIX
ANYTHING.
OVER AND OVER AND OVER AGAIN
PEOPLE TOLD STORIES ABOUT THEIR
DOGS OR THEIR CATS AND IN SOME
CASES THEIR HORSES JUST STANDING
WITH THEM, SITTING WITH THEM,
LAYING WITH THEM WHEN THEY WERE
CRYING AND JUST BEING THERE.
VERY POWERFUL.
SO FOR MORE INFORMATION THERE'S
WEBSITES AND I WANTED TO
DEDICATE THIS PRESENTATION TO
ALL THE BABIES AND CHILDREN GONE
TOO SOON.
THIS IS MY DAUGHTER WHO DIED IN
1994.
I WANT TO THANK THE NIH BECAUSE
28 1/2 YEARS AGO THERE WEREN'T
THESE DISCUSSIONS HAPPENING
ABOUT TRAUMATIC GRIEF AND THE
DEATH OF A BABY TO STILLBIRTH.
IT WAS NOT TALKED ABOUT AND I
HONOR ALL OF YOU FOR BEING HERE
AND WITH TREMENDOUS GRATITUDE
THANK YOU.
>>THANK YOU.
I APPRECIATE YOUR SHARED YOUR
EXPERTISE AND EXPERIENCE WITH US
TO HELP US MOVE FORWARD AND
IMPROVE.
YOU TOUCHED ON THE WORK AND
CREATE A BETTER MODEL.
PLEASE STAY WITH US BECAUSE
WE'LL HAVE QUESTIONS.
>>A QUICK COMMENT.
OF COURSE.
>>WHAT A POWERFUL TALK THAT YOU
JUST GAVE US.
NOT JUST IMPACTFUL -- I HAVE A
LUMP IN MY THROAT LISTENING TO
EVERYTHING THAT YOU SAID ABOUT
THE GRIEF THAT MOTHERS FACE AT
THE LOSS OF THEIR BABY AND HOW
YOU ACTUALLY CONNECTED WITH
EVERYONE.
THANK YOU VERY MUCH.
THIS IS REALLY PHENOMENAL.
>>THANK YOU.
THANK YOU VERY MUCH.
I APPRECIATE IT VERY MUCH.
THANK YOU EVERYONE
>>THANK YOU.
>>SO LET'S TAKE A BREAK FOR A
MOMENT.
IT'S POWERFUL PRESENTATION WE
WANT TO PAUSE ON IT.
THE NEXT PRESENTER IS
DR. KATHERINE GOLD AN ASSOCIATE
PROFESSOR OF FAMILY MEDICINE AND
OBSTETRIC GYNECOLOGY AT THE
UNIVERSITY OF MICHIGAN.
SHE WILL CONTINUE TO WORK WITH
US ON PSYCHOLOGICAL IMPACT AND
TREATMENT OF FAMILY AND WOMEN
SUFFERING THIS TRAGIC EVENT.
THANK YOU FOR ACCEPTING OUR
INVITATION.
>>THANK YOU.
I WANT TO THANK DR. CACCIATORE
FOR A LOVELY TALK.
IT'S A BEAUTIFUL INTRODUCTION TO
GRIEF IN ALL THE WAYS IT
INFILTRATES OUR LIVES.
I WAS HOPING SHE'D DO EXACTLY
THAT AND DECIDED TO TAKE A
DIFFERENT SPIN ON MY TALK SO WE
DIDN'T PRESENT THE SAME
INFORMATION.
I WANT IT TALK ABOUT WHEN GRIEF
DOESN'T GO WELL AND TALK A
LITTLE BIT ABOUT WHERE I SEE THE
RESEARCH NEEDS BEING IN THE
BEREAVEMENT FIELD.
I DO LOW-RISK OBSTETRICS AND
PART OF A PRENATAL CENTER IN
DETROIT AND HAVE SEEN BAD
OUTCOMES FOR HIGH-RISK MOMS AND
IT'S A PERSONAL THING FOR ME.
I HAVE NO DISCLOSURES.
SEVERAL PEOPLE TALKED HOW
STILLBIRTH IS SUCH SO MUCH MORE
PREVALENT THAN THE MATERNAL
HEALTH OUTCOMES WE WORRY ABOUT
AND I WANT TO REINFORCE WE HAVE
SO MANY STILLBIRTHS WITH THE
UNEXPLAINED INFANT DEATHS AND
MATERNAL DEATHS AND IT'S
IMPORTANT WE CONTINUE TO LOOK AT
STILLBIRTH AS A CRITICAL
COMPONENT.
STILLBIRTH IS A VERY UNIQUE
LOSS.
IT'S TYPICALLY UNEXPECTED.
MY FAVORITE ARTICLE WAS PARENTS
EXPERIENCING TWO LIFE-CHANGING
EVENTS AT THE STATEMENT TIME.
THERE'S RELATIVELY SHORT TIME
FOR GRIEF AND A SHORT TIME FRAME
FROM DIAGNOSIS TO LOSING A BABY.
IT'S TRAUMATIC FOR FAMILIES AND
MEDICAL STAFF.
THAT'S IMPORTANT TO THINK ABOUT
AS WE MOVE FORWARD.
BEREAVEMENT IS NORMAL AND THE
MODEL OF GRIEF SUGGESTS WE GO
BACK AND FORTH AND FOLK FOCUS ON
RESTORING OUR LIVES AND WE'RE
OFTEN GOING BACK AND FORTH
BETWEEN THE TWO STATES.
BEREAVEMENT IS NORMAL.
THE PROBLEM IS THERE ARE CERTAIN
SITUATI
SITUATIONS WHY WHERE MOMS
STRUGGLE MORE THAN OTHERS AND
CERTAIN MOMS WE NEED TO GET
AUTOPSIES AND SIMILARLY, MANY
MOMS AND FAMILIES DO FINE AND
RECOVER AFTER STILLBIRTH BUT
SOME ARE AT HIGH RISK FOR WORSE
OUTCOMES AND THOSE THE ONES WE
NEED TO FOCUS ON.
THERE'S RISKS AND THINGS
UNEXPECTED 1 AND POOR CARE
AROUND THE TIME OF LOSS CAN
INCREASE THE TRAUMATIC NATURE.
I WAS STARTING OUT AS A
RESEARCHER WHEN THE STILLBIRTH
COLLABORATIVE RESEARCH NETWORK
WAS GOING I WASN'T AWARE OF
THEIR PRESENCE UNTIL I GOT INTO
MY OWN STUDY.
I TRIED SERVING MOMS IN MICHIGAN
OVER A TWO-YEAR PERIOD ON A
POPULATION LEVEL SO WE WORKED
WITH THE STATE OF MICHIGAN AND
REACHED OUT USING INFORMATION
AND MATCHED THEM WITH A MOM WHO
HAD A LIVE BIRTH DURING THE SAME
TIME PERIOD.
I PURPOSELY FOCUSSED ON BOTH
MOMS WHO HAD A STILLBIRTH AND
MOTHERS WHO HAD INFANTS DIE IN
THE FIRST 28 DAYS OF LIFE.
TYPICALLY IF A CHILD DIES IN
THIS TIME PERIOD THEY HAVEN'T
LEFT THE HOSPITAL THEY'RE
USUALLY PREMATURE OR SICK.
WHAT WE HAD KNOWN TO THIS POINT
IS OUTCOMES IN TERMS OF
BEREAVEMENT AND TO INCREASE THE
SAMPLE SIZE I WANTED TO LOOK AT
BOTH.
I WAS ABLE TO CONTROL FOR OTHER
THINGS THAT MAY HAVE AFFECTED
MENTAL HEALTH OUTCOMES,
PSYCHIATRIC HISTORY, VIOLENCE
AND SOCIAL SUPPORT BECAUSE THERE
COULD BE OTHER THINGS THAT
AFFECT HOW MOMS DO AFTER
DELIVERY.
I THINK THIS THE MOST IMPORTANT
SLIDE.
THERE WAS A HIGHER RISK FOR
MEETING CRITERIA FOR MENTAL
HEALTH DISORDERS NINE MONTHS
AFTER THE LOSS FOR EVERY MEASURE
WE LOOKED AT FOR DEPRESSION,
POSTTRAUMATIC STRESS DISORDER
AND ANXIETY AND SOCIAL PHOBIA.
THIS IS CONTROLLING FOR ALL THE
OTHER FACTORS THAT MIGHT AFFECT
YOUR OUTCOMES.
SO THIS REALLY TELLS US THAT
MENTAL HEALTH IS A CRITICALLY
HIGH RISK AREA FOR FAMILIES
AFTER A LOSS AND ALSO THAT THE
OUTCOMES FOR MOMS WITH
STILLBIRTH AND THOSE MOMS WITH
EARLY INFANT DEATHS WERE VERY
SIMILAR.
THERE WERE NO STATISTICAL
DIFFERENCES AND THERE WAS NO
DIFFERENCES IN RACE FOR THE
MENTAL HEALTH DISORDERS.
WHY DOES MENTAL HEALTH MATTER?
IT'S NOT A FLIPPANT QUESTION?
NOT JUST DAILY FUNCTION OR
PHYSICAL HEALTH IT'S ALSO FUTURE
REPRODUCTIVE HEALTH.
WE TYPICALLY THINK IF SOMEONE
HAS A STILLBIRTH THERE COULD BE
MENTAL HEALTH CONSEQUENCES DOWN
THE READY FOR THE MOM.
THERE'S ALSO SIGNIFICANT
EVIDENCE IN ENDOCRINOLOGY,
NEUROBIOLOGY THAT SUGGESTS THIS
MAY BE A TWO-WAY STREET.
IN SOME RESEARCH I DID EARLY ON
USED A LONGITUDINAL COHORT TO
LOOK AT MOMS WITH A MENTAL
HEALTH DIAGNOSIS AND SUBSEQUENT
BIRTH OUTCOMES AND COMBINED
STILLBIRTH AND MISSCARRIAGES AND
HAVING A MENTAL HEALTH DIAGNOSIS
INCREASED THE RISK WHICH FOR ME
IS IMPORTANT BECAUSE IT MAY
AFFECT SUBSEQUENT PREGNANCIES.
STILLBIRTH ALSO IMPACTS SOCIAL
SUPPORT.
I SAID POOR SOCIAL SUPPORT WAS A
FACTOR THAT CAN INCREASE RISK
FOR STRUGGLING AFTER A
STILLBIRTH.
IT GOES BOTH WAYS.
JOANNE REFERENCED THIS.
I DID A STUDY SIMILAR TO HERS.
WE LOOKED NOT JUST AT MARRIAGES
BUT ANY PARTNERSHIPS WHETHER
SOMEONE WAS MARRIED OR NOT AND
LOOKING AT LONGITUDINAL DATA AND
LOOKED AT WITH A LIVE BIRTH OR
MISCARRIAGE OR STILLBIRTH AND
FOLLOWED THAT RELATIONSHIP
OVERTIME TO SEE WHAT HAPPENED.
WE THEN DID SURVIVAL ANALYSIS
AND SOME MAY BE FAMILIAR WITH
SURVIVAL ANALYSES AND SOME LESS.
BASICALLY IF YOU LOOK AT WHAT
HAPPENS TO THE RELATIONSHIPS.
AT THE TOP WE HAVE LIVE BIRTHS.
IT GOES FROM EVERYBODY BEING
TOGETHER AT THE TIME THE BABY IS
BORN WE EXCLUDED PEOPLE WHO
WEREN'T WITH A PARTNER AT THE
TIME THE BABY WAS BORN AND HALF
THE FAMILIES ARE STILL TOGETHER
AT THE END OF 15 YEARS.
THE BLUE LINE IS MISCARRIAGE.
WHAT WE'RE INTERESTED IN IS THE
PERIOD IN THE FIRST 1-2 YEARS
WHERE THE BLUE AND BLACK LINE
SEPARATE BECAUSE THERE'S
SUDDENLY INCREASED RISK IN TERMS
OF SEPARATION OF THE
RELATIONSHIP AND IN FACT THE
HAZARD RATIO OF 1.22 A 22%
HIGHER RISK OF SEPARATING WITH A
PARTNER AFTER A MISCARRIAGE.
THE PINK LINE WAS STILLBIRTH 40%
HIGHER AND THAT RISK PERSISTED
OVER THE FIRST 10 YEARS.
IT DOESN'T MEAN SOMEONE WHO'S
HAD A LOSS IS DOOMED TO HAVE
THEIR RELATIONSHIP FAIL.
WHAT I THINK TYPICALLY IS GOING
ON IS THAT RELATIONSHIPS
STRUGGLING BEFORE A BIRTH ARE
MORE LIKELY TO BE AT RISK IF
THERE'S A BAD OUTCOME WITH THAT
BIRTH.
SO THOSE FAMILIES WHO MAY
ALREADY STRUGGLE WITH SOCIAL
SUPPORT MAY HAVE FURTHER
STRUGGLES DOWN THE ROAD.
I'LL TALK A LITTLE BIT ABOUT
TREATMENT.
DESPITE MOMS HAVING HIGH RATES
OF SYMPTOMOLOGY FEW SOUGHT
TREATMENT OF THE MOMS WITH
POSITIVE SCREENS FOR ANY OF
THESE DISORDERS, ONLY 42% OF
THOSE WITH DEPRESSION AND A
THIRD OF THOSE MOMS WITH PTSD
REPORTED ANY TYPE OF TREATMENT.
WE WERE BROAD IN OUR DEFINITIONS
OF WHAT CONSTITUTED TREATMENT.
PEOPLE ARE NOT SEEKING HELP FOR
THIS.
THERE WAS NO DIFFERENCE AND
THERE WAS A DIFFERENCE BY
TREATMENT.
WHITE WOMAN WERE TWICE AS LIKELY
AS AFRICAN AMERICAN WOMEN TO GET
TREATMENT.
THERE'S BEEN TALK ABOUT THE HIGH
RATES OF AFRICAN AMERICAN WOMEN
HAVING STILLBIRTHS AND THEY'RE
ALSO LESS LIKELY TO GET
TREATMENT.
WE KNOW THE MENTAL HEALTH
LITERATURE THAT BLACK WOMEN HAVE
BEEN LESS LIKELY TO SEEK
TRADITIONAL HEALTH CARE WHETHER
SEEING PHYSICIANS LIKE ME OR
PSYCHIATRISTS OR BEING ON
MEDICATIONS AND WE ALSO KNOW
THERE ARE A LOT BARRIERS TO
MENTAL HEALTH TREATMENT IN THIS
COUNTRY.
WE HAVE 42% OF BIRTHS ARE
MEDICAID FUND AND MANY OF THOSE
MOMS WILL LOSE THEIR MEDICAID
INSURANCE AFTER DELIVERY.
IF YOU HAVE A STILLBIRTH YOU'RE
NOT TAKING YOUR BABY TO A
PEDIATRICIAN TO WATCH THE MOM'S
MENTAL HEALTH AFTER DELIVERY OR
TO A PHYSICIAN WATCHING FOR THE
MENTAL HEALTH OUTCOMES.
PEOPLE LOSE THEIR INSURANCE.
THEY MAY NOT HAVE TIME TO ATTEND
TREATMENT.
THEY MAY HAVE CHILDCARE BARRIERS
AND THEN YOU HAVE TRANSPORTATION
BARRIERS.
THESE ARE ALL SERIOUS BARRIERS.
IN TERMS OF BEING ABLE TO HAVE
HEALTH EQUITY.
I'VE BEEN INTERESTED IN TWO VERY
SPECIFIC AREAS OF MENTAL HEALTH
TREATMENT.
ONE IS THINKING ABOUT THE TYPE
OF CARE THAT HAPPENS WHEN
SOMEONE IS IN THE HOSPITAL AND
DELIVERING A STILLBIRTH BABY AND
THE SECOND IS ONLINE PEER
SUPPORT.
I THINK ABOUT A STILLBIRTH AS
BEING A TRAUMA MUCH LIKE JOANNE
TALKED ABOUT AND WHEN A MOM IS
TOLD HER BABY HAS DIED THIS
COMES OFTEN AS A COMPLETE SHOCK.
IT'S ALMOST AS IF A CAMERA
STARTS ROLLING THAT THE MOMENT
AND RECORDING WHAT IS HAPPENING
AND THOSE ARE MEMORIES THAT PLAY
OVER AND OVER AND PART OF WHAT
CONTRIBUTE TO THE TRAUMA OF
THIS.
IN MY MICHIGAN MOTHER STUDY WE
ASKED MOMS ABOUT THEIR
EXPERIENCE AND GOT HUNDREDS OF
COMMENTS AND I'LL SHARE THREE.
DR. X WAS AWFUL.
SHE TOLD ME I WAS FAT AND
BECAUSE I HAD MEDICAID AND THE
NURSES WERE AWESOME.
THE TRIAGE PEOPLE WERE THE WORSE
PEOPLE.
I ALMOST PUNCHED BOTH.
THEY MADE ME FEEL LIKE IT'S MY
FAULT.
I THINK I LIKE HOW THE DOCTOR
TOLD ME, NURSE, I'M NOT GOOD AT
FINDING THE HEARTBEAT, LET ME
FIND THE DOCTOR AND A LADY WITH
AN ULTRASOUND MACHINE CAME IN
AND THEN THE DOCTOR CAME IN AND
SAID I'M SORRY, I SAID FOR WHAT
AND HE SAID YOUR BABY'S DEAD.
I THOUGHT THEY TOLD YOU.
THIS WILL REPLAY OVER AND OVER
FOR MOMS FOR YEARS AND WE NEED
TO DO IT RIGHT.
WE DON'T HAVE A LOT OF DATA HOW
IT AFFECTS OUTCOMES.
CLINICALLY DO WE KNOW HOW IT
MATTERS?
PARENTS TELL US IT MATTERS A LOT
BUT THERE'S LIMITED
UNDERSTANDING WHAT KINDS OF CARE
IS OFFERED IN HOSPITALS ACROSS
THE COUNTRY.
THERE'S LITTLE DATA SPECIFICALLY
TIMED TO THE KIND OF CARE GIVEN
TO THE SPECIFIC OUTCOMES FOR
FAMILIES.
I LOVE THIS PICTURE.
THE NEXT PICTURE APPEARED ON THE
STACK OF PHOTOGRAPHS FROM THE
HOSPITAL PROVIDED TO THE HOME.
YOU'LL SEE HERE'S THE MOM'S BABY
IN A METAL SINK AND THE PIECE OF
PAPER HAD THE MOM'S NAME AND
MEDICAL RECORD WHICH I COVERED
IN THE PHOTO BUT YOU CAN IMAGINE
SEEING YOUR BABY IN A METAL SINK
WILL BE SOMETHING THAT NEVER
GOES AWAY FROM THAT MOM AND
PROBABLY A MINOR TRANSGRESSION
PROBABLY THE NURSE WAS NOT
THINKING OF THE IMPACT BUT THOSE
MINOR MISSTEPS HAPPEN ALL THE
TIME AND CAN ADD UP AND HAVE
PROFOUND AFFECTS ON FAMILIES.
CURRENTLY I'VE BEEN WORKING ON A
STUDY TO TRY TO UNDERSTAND WHAT
IS ACTUALLY HAPPENING IN
HOSPITAL CAN CARE.
THIS WAS A NATIONAL SAMPLE.
I TOOK DATA FROM THE AMERICAN
HOSPITAL ASSOCIATION AND LIMITED
IT TO HOSPITALS WITH AT LEAST
100 DELIVERIES PER YEAR AND SAID
LET'S SAMPLE 10% AND THROUGH A
SAMPLING PROCESS WE IDENTIFIED
THE SAMPLE AND HOSPITALS WITHIN
EACH STATE AND RANKED THEM BY
DELIVERY VOLUME AND WHEN WE HAD
TO PICK HOSPITALS, SAY NEW YORK,
WE PICKED ONE FROM THE LARGEST
VOLUME OF DELIVERIES AND THE
NEXT AND THEN THE NEXT AND THEN
SMALLEST.
I WANTED TO JUST LOOK JUST AT
THE BIG HOSPITALS DOING
STILLBIRTH CARE BUT SMALL
HOSPITALS WHERE YOU STILL HAVE
MOMS DELIVER THE BABIES.
WE REACHED OUT TO A BEREAVEMENT
COORDINATOR USUALLY A NURSE AND
HAD A SURVEY OF QUESTIONS.
WE ASKED AND SAID WHICH TOPICS
ARE ROUTINELY DISCUSSED BEFORE
THEY GO HOME, 90% OF PEOPLE
TALKED ABOUT OPTIONS FOR A
FUNERAL AND MEMORIAL.
THAT FITS THE DATA JOANNE SHOWED
YOU.
75% TALKED ABOUT NORMAL GRIEVING
AND AT A QUARTER OF HOSPITALS
ARE THEY NOT TALKING TO PARENTS
ABOUT WHAT TO EXPECT AND WHO TO
CONTACT FOR FOLLOW-UP AND A
THIRD OF HOSPITAL PARENTS ARE
NOT ROUTINELY GIVEN THE NAME OF
FOR FOLLOW-UP.
ONLY HALF TALK ABOUT THE IMPACT
OF LOSS ON DAD.
ONLY HALF TALK ABOUT INTERNET
SUPPORT OPTIONS AND LESS THAN
HALF ARE TALKING ABOUT THE
INCREASED RISKS FOR MENTAL
HEALTH PROBLEMS OR SUBSTANCE
USE.
THESE ARE CONCERNING NUMBERS FOR
ME.
THE OTHER ISSUE IS BEREAVEMENT
TRAINING AND I'M GLAD HRSA IS ON
THE CALL BECAUSE IT'S ESSENTIAL.
I DID A STUDY OF OBSTETRICIANS
AND WANTED TO KNOW THE EMOTIONAL
IMPACT OF DELIVERING A
STILLBIRTH AND WHERE THERE'S
KNOWN CAUSE OF DEATH HOW OFTEN
DID YOU FEEL GUILTY.
NOT WHERE WE THOUGHT THE
PHYSICIAN HAD SOMETHING TO DO
WITH THE DEATH OR BLAME YOURSELF
AND A THIRD BLAMED THEMSELVES.
I ASKED HOW OFTEN DID YOU WORRY
ABOUT DISCIPLINARY OR LEGAL
ACTION AND 43% WORRIED ABOUT
THIS.
THIS IS NOT FANTASTICAL
THINKING.
AFTER POOR NEUROLOGICAL OUTCOME
STILLBIRTH IS THE SECOND LEADING
CAUSE OF LAWSUITS AGAINST
OBSTETRICIANS.
STILLBIRTHS ARE EMOTIONALLY
DIFFICULT FOR PHYSICIANS AND
BRINGS UP LOTS OF LEGAL ISSUES
AND FEARS AND PHYSICIANS CARRY
AROUND A LOT OF GUILT ABOUT
STILLBIRTH EVEN WHEN THERE WAS
NOTHING THEY COULD PREVENT.
WE ASKED DID YOU GET TRAINING ON
HOW TO COPE WITH THIS AND HALF
SAID YES AND ABOUT WHAT
COLLEAGUES DO THEY HAVE ADEQUATE
TRAINING.
THEY WERE LESS LIKELY TO THINK
THE PEOPLE THEY'LL WORKED WITH
HAD ADEQUATE TRAINING TO DEAL
WITH THE EMOTIONAL JIM --
IMPACT OF THE LOSSES.
THEY SAID 43% OF HOSPITALS
REQUIRED TRAINING ON LOSS AND
HALF SAID BEREAVEMENT TRAINING
WAS REQUIRED FOR LABOR AND
DELIVERY NURSES AND 14% SAID IT
WAS REQUIRED FOR PHYSICIANS.
THIS IS A BIG GAP IN OUR
RESEARCH AND CLINICAL CARE WE
NEED TO ADDRESS.
MOST THE RESEARCH IS DESCRIPTIVE
AND QUALITATIVE.
I DID MY OWN SYSTEMATIC HAVE A
FOR BEREAVEMENT CARE AFTER
STILLBIRTH AND I FOUND I THINK
SEVEN.
NOT ALL ARE IN THE U.S.
THIS IS OVER A 30-YEAR PERIOD.
MOST ARE SMALL.
ONLY A FEW LOOK AT MENTAL HEALTH
SPECIFICALLY.
MOST LOOK AT PHYSICAL SYMPTOMS
OR MENTAL GRIEF SYMPTOMS.
ONE HAS NOT EVEN STARTED.
WHO IS MISSING?
BLACK WOMEN AND ETHNIC
MINORITIES BUT TO ME THE BLACK
WOMEN ARE THE KEY AREA BECAUSE
THESE ARE AT HIGHEST RISK OF THE
BAD OUTCOME.
WHEN I DID MY 5-SECOND PUB MED
SEARCH I FOUND 20 ARTICLES IN
THE LAST YEARS AND 14 ARTICLES
FOCUSSING ON AFRICAN AMERICAN
WOMEN AND GRIEF FROM STILLBIRTH
AND OUTCOMES.
AND IT'S IMPORTANT TO REMEMBER
HOW WE RECRUIT FAMILIES IS
REALLY IMPORTANT.
MOST OF THE WORK THAT'S OUT
THERE MOST THE STUDIES HAVE
RECRUIT FROM SUPPORT GROUPS.
WE ARE MOSTLY SURVEYING WHITE
AND UPPER MIDDLE-CLASS WOMEN AND
WE HAVE SMALL SAMPLE SIZES AND
WE'RE NOT MEASURING CONFOUNDERS
WHICH MIGHT AFFECT OUTCOMES.
IT MAY NOT JUST BE THE LOSS
THERE MAY BE OTHER THINGS WE
NEED TO STUDY.
WHEN WE PULL FROM SUPPORT GROUPS
I'VE DONE WORK AND WOMEN IN BOTH
SUPPORT GROUPS TEND TO BE WHITE,
WELL EDUCATED AND 42% OF BIRTHS
ARE ON PUBLIC INSURANCE, FEW
WERE IN THESE SUPPORT GROUPS ARE
WOMEN WHO HAD PUBLIC INSURANCE.
WHILE IT'S A CONVENIENT WAY TO
GET FAMILIES TO TALK ABOUT THEIR
EXPERIENCES IT'S NOT
REPRESENTATIVE OF THE FAMILIES
EXPERIENCES THE LOSSES.
WHEN I LOOK AT THE MOM WHO'S
PREGNANT WE WORK IN A RESEARCH
COMMUNITY WHERE WE SEGMENT HER.
WE HAVE THE PEOPLE LOOKING AT
MATERNAL DEATH AND LOOKING AT
INFANT DEATH AND LOOKING AT
STILLBIRTH.
IF WE THOUGHT HOW WE COULD GROUP
OUTCOMES WE COULD HAVE STRONGER
STUDIES WITH GREATER POWER.
AND WE LOOKED AT STUDIES THAT
MAYBE DIDN'T SEEK TO FOCUS ON
STILLBIRTH BUT STILL COLLECTED
DATA THAT WAS RELEVANT.
WE NEED TO THINK OF EXPANDING
OUR COHORTS TO COMBINE ALL THE
CAUSES OF DEATH.
WOMEN DIE IN CHILD BIRTH FOR THE
SAME REASONS INFANTS DIE AFTER
BIRTH OR THE SAME REASONS BABIES
DIE AFTER THEIR BORN AND NEED TO
LOOK AT HOW WE LOOK AT ALL THREE
GROUPS AT THE SAME TIME.
I WANT TO THINK ABOUT RETHINKING
OUR BEREAVEMENT COHORTS AND LOSS
IS A CONTINUUM AND CAN HAPPEN
FROM THE FIRST TRIMESTER UP
THROUGH THE FIRST YEAR OF LIFE.
FROM THE RESEARCH IT LOOKS LIKE
FAMILIES IN THE AREAS IN BLUE
HERE HAVE SIMILAR GRIEF
OUTCOMES.
SIMILAR MENTAL HEALTH OUTCOMES.
THEY'RE NOT EXACTLY THE SAME BUT
VERY SIMILAR.
WOMEN WITH EARLY MISCARRIAGES DO
BETTER LONG TERM AND THOSE WHO
HAVE LIKE A SIDES DEATH HAVE A
DIFFERENT TRAJECTORY BUT IT'S
LARGER THAN JUST STILLBIRTH
LOSS.
IF YOU LOSE A BABY AT 18 WEEKS
YOU'RE EXPERIENCE IS NOT THAT
DIFFERENT FROM A MOM WHO LOSES A
BABY AT 22 WEEKS.
I THINK IT'S IMPORTANT WE THINK
OF WAYS TO EXPAND OUR COHORTS.
AND FINALLY I WANT TO MAKE A
COMMENT ON FUNDING.
I APPRECIATED THE RESEARCH AND
THE PRESENTATION ABOUT NIH
FUNDING.
MY CONVERSATIONS HAVE BEEN
REALLY FRUSTRATING AT TIMES WITH
NIH BECAUSE I COME TO NICHD AND
I SAY I WANT TO DO A STUDY ON
MENTAL HEALTH AFTER STILLBIRTH
AND THEY SAY, WELL, WE DON'T
FUNDAMENTAL HEALTH YOU WANT TO
GO TO NIMH AND THEY SAY WE DON'T
FUND BEREAVEMENT.
YOU OUGHT TO GO TO THE NURSING
INSTITUTE AND I GO THERE AND
THEY SAY, OOH, WE FUND INFANT
DEATH BUT NOT STILLBIRTH SO YOU
HAVE TO GO TO NICHD.
AGAIN, WE NEED TO THINK IN OUR
RESEARCH STUDIES HOW WE'RE BEING
MORE INCLUSIVE AND ALWAYS
INCLUDING STILLBIRTH AND INFANT
DEATH AND MATERNAL MORTALITY AS
IMPORTANT OUTCOMES WITH RELATED
CAUSES.
I THINK TO DO THAT WE NEED TO
THINK ABOUT HOW WE QUANTIFY THE
COST OF STILLBIRTH.
WITH BABY'S IN THE NICU SOMEONE
NEEDS TO SAY WE NEED TO PREVENT
THIS BUT THERE'S COSTS NOT WELL
MEASURED, COSTS FOR MENTAL
HEALTH AND LOSS OF WORK AND
PRODUCTIVITY AND HEALTH CARE
COSTS LOST AND WE NEED TO PUT A
PRICE TAG ON THE COST OF FAMILY
AND SOCIETY WHEN A BABY DIES NOT
JUST AFTER IT'S BORN BUT BEFORE
IT'S BORN.
I'LL STOP THERE, THANK YOU.
>>THANK YOU, DR. GOLD ANOTHER
VERY POWERFUL PRESENTATION.
AGAIN, IT'S A WONDERFUL STUDY
AND LOOKING HOW WE CAN BE BETTER
PREPARED AS A PHYSICIAN AND
HOSPITAL AND NICHD.
THANK YOU VERY MUCH I HOPE YOU
CAN STAY FOR THE PANEL BECAUSE
WE HAVE QUESTIONS COMING IN.
I APPRECIATE YOU SHARING THIS
WITH US.
THE NEXT PRESENTATION IS FROM
DR. JOANNE STONE THE PRESIDENT
OF THE SOCIETY FOR MATERNAL
FETAL MEDICINE.
THE CHAIR OF THE RA QUELL
ANDHAMMEE GILLINSKI DEPARTMENT
OF OBSTETRICS GYNECOLOGY AND
TALK ABOUT THE RAINBOW CLINIC.
THANK YOU FOR ACCEPTING THE
INVITATION.
>>THANK YOU FOR INVITING ME TO
SPEAK ABOUT THIS.
I WANT TO TALK ABOUT HOW WE
STARTED THIS AND THE CURRENT
STATUS OF WHERE WE ARE.
YOU KNOW THE STATISTICS AND IN
NEW YORK CITY IT'S ABOUT 700
STILLBIRTHS IN EACH YEAR.
THESE THE RISK FACTORS PA THAT
PUT PATIENTS AT HIGHER RISK AND
SMOKING, MEDICAL CONDITIONS,
MULTIPLE GESTATIONS AND A PRIOR
PREGNANCY OR LOSS OR STILLBIRTH.
THAT'S THE REAL MOTIVATION IN
TRYING TO PREVENT ANY
PREVENTABLE STILLBIRTHS.
THIS IS SHOWING THE RATE BY RACE
AND ETHNICITY AND IN NEW YORK
CITY IT'S A DIVERSE PATIENT
POPULATION.
WE HAVE A LOT OF PATIENTS THAT
ARE AT THE HIGHER RISK FOR
STILLBIRTH.
THIS ALSO SHOWS THE INCREASED
RISK OF STILLBIRTH BY MATERNAL
AGE.
NEW YORK IS LIKE MANY OF THE
LOWER CITIES AND IT PUTS THEM AT
A HIGHER RISK MAKING OUR
POPULATION CERTAINLY A LITTLE
BIT UNIQUE.
THIS IS SHOWING STILLBIRTH RATE
OVER TIME.
WHILE THERE'S SOME CHANGE THAT
HAVE OCCURRED YOU CAN SEE HOW
FLAT IT IS.
TRYING TO DO WHATEVER WE CAN TO
REDUCE THE STILLBIRTH RATE IS
WHAT WE'RE ALL HERE FOR AND PLAN
TO HIGHLIGHT THAT.
THE GOAL IS TO SUPPORT WOMEN AND
FAMILIES THROUGHOUT THEIR
DIFFICULT JOURNEY ON A FUTURE
PREGNANCY WITH ENHANCED CLINICAL
CARE AND SUPPORT AN REDUCE
ANXIETY FOR FAMILIES AND
DECREASE THE HIGH RISK FOR THE
NEXT PREGNANCY.
IT STARTED AND WE'VE BEEN TAKING
CARE OF PATIENTS MY ENTIRE
CAREER WHO HAD A STILLBIRTH BUT
SEVERAL OF THE PATIENTS CAME
TOGETHER AND GOT INVOLVED WITH
AN ORGANIZATION WHICH I'LL
MENTION LATER AND REALLY WANTED
TO CREATE A MODEL AFTER THE
RAINBOW CLINICS IN THE U.K.
A RAINBOW BABY IS A BABY YOU
CARRY AFTER HAVING SUFFERED A
STILLBIRTH IN THE PAST.
WHEN THIS ALL STARTED WE HAD
SEVERAL CONVERSATIONS ABOUT HOW
WE CKCAN MODEL OUR RAINBOW CLIN
AFTER THEIRS AND HAVE A SHARED
IRB TO COLLECT DATA ON OUTCOMES.
IT PATIENTS WHO HAVE HAD A
STILLBIRTH THE NEXT PREGNANCY
THEY'RE AT THIS HEIGHTENED LEVEL
OF ANXIETY THAT JUST NEEDS
REALLY SPECIAL ATTENTION.
WE MEET THEIR NEEDS BY PROVIDING
APPOINTMENTS AND TECHNOLOGY
SURVEILLANCE BY ULTRASOUND
NON-STRESS TESTS AND PROFILES.
WHATEVER THEY NEED.
THE PROVIDERS AND STAFF ARE
TRAINED AND THERE'S SO MANY
THINGS THAT CAN BE TRIGGERS.
FOR EXAMPLE, IT'S COMMON TO WALK
INTO A ROOM AND ULTRA SOUND ROOM
AND SAY IS THIS YOUR FIRST
PREGNANCY AND THAT'S SO
TRIGGERING BECAUSE THEY DON'T
KNOW HOW TO BEGIN TO ANSWER THAT
QUESTION.
OR IF THEY'RE SCHEDULING WEEKLY
APPOINTMENTS FOR SURVEILLANCE,
HAVING THE FRONT DESK WHO
SCHEDULED THE APPOINTMENT SAYING
WHY DO YOU NEED SO MANY
APPOINTMENTS AND THINGS LIKE
THAT.
THESE ARE ALL THE THINGS THAT
PEOPLE DON'T REALLY REALIZE CAN
BE QUITE ANXIETY PROVOKING FOR
THE PATIENTS IN ADDITION, WE
HAVE SOCIAL WORK SUPPORT WHO
FOLLOWED THEM AND HAVE
NUTRITIONAL SUPPORT AND THERE'S
A COMPREHENSIVE APPROACH FOR
CARRYING FOR THE PATIENTS.
THIS THE ROAD MAP WE HAD WHERE
WE STARTED OFF BUILDING THE
RAINBOW CLINIC.
IF YOU JUST HIT ENTER, SOMETHING
WILL POP UP.
THIS STARTED FEBRUARY 1, 2021 WE
HAD A MEETING TO TALK ABOUT HOW
WE CAN DO THIS WHERE IT WILL BE
AND HOW WE CAN AFFECT THE
TRAINING AND WE CAME UP WITH THE
PROPOSAL THE NEXT DAY MARCH AND
APRIL WE MET WITH THE
ADMINISTRATIVE LEADERSHIP TO
PROPOSE THIS AND DISCUSS THE
LOGISTICS BEHIND THIS AND HOW IT
CAN BE SUPPORTED.
AND WE FORMALIZED THE STRATEGY
AND IDENTIFIED A FUNDING SOURCE
FOR THIS.
THE IDEA IS IT WAS OPEN TO
ANYBODY WHETHER THEY WERE
INSURANCE IT DIDN'T MATTER.
THIS GIVES AN EXAMPLE OF OUR
FUNDING.
THE DIFFERENT THE REALITY BEHIND
STARTING THIS IS IT DOES REQUIRE
FUNDING SUPPORT SO FUNDING
SOCIAL WORKER, THE EXCLUSIVE
FRONT DESK SCHEDULING AND A
COORDINATOR COORDINATING ALL THE
APPOINTMENTS FOR THEM.
WE LOOKED AT THE PROJECTED
PATIENTS FOR YEAR ONE AND YEAR
TWO AND THREE.
WE HAD PATIENTS PER SESSION AND
THE TRUTH IS THE FIRST CONSULTS
TAKE -- I BLOCK OFF AN HOUR AND
ALWAYS RUNNING LATE BECAUSE IT
TAKES AN HOUR AND A HALF BY THE
TIME WE GO THROUGH ALL THE
RECORDS AND IT GIVES AN IDEA OF
OVERHEAD AND BILLING AND ALL THE
OTHER STUFF.
THIS WAS THE SUPPORT WE FELT WE
NEEDED.
FORTUNATELY A PUSH FOR EMPOWER
PREGNANCY IS A PHILANTHROPIC
ORGANIZATION FOCUSSED ON
PREVENTING STILLBIRTHS AND THEY
FUNDED US FOR THREE YEARS.
WE'RE HOPING TO BE SUSTAINABLE
PARTLY AFTER THIS BUT WE'LL SEE
HOW IT'S GOING.
THEY'VE BEEN INCREDIBLE IN TERMS
OF DEVELOPING MODULES FOR
TRAINING FOR THE STAFF AND SO
THIS IS ACTUALLY THE BUILDING
THAT WE WORK IN AND PRACTICES.
WE HAVE A MULTI-DISCIPLINARY
CLINIC.
WE HAVE MEDICINE SPECIALISTS.
IT'S CURRENTLY ME DOING IT BUT
MY COLLEAGUES AND OTHER MFMs ARE
STARTING TO NOW SEE RAINBOW
PATIENTS FOR CONSULTATION AS
WELL AS TAKING SEEING THEM FOR
THEIR OBSTETRICAL CARE.
THE WAY WE FUNCTION IS TYPICALLY
WE START WITH THE
PRECONCEPTIONAL CONSULTATION AND
IF THEY WANT TO STAY WITH US FOR
DELIVERY, THEY STAY WITH US BUT
WE ALSO KNOW THAT SOME PATIENTS
WANT HAVE A PLAN OF ACTION AND
THEN GO BACK TO THEIR OB
PROVIDER.
AGAIN, THE SOCIAL WORKER WHO
SPECIALIZES IN THISES
PSYCHOLOGICAL SUPPORT FROM THE
BEGINNING AND SHE HAS A LIST OF
THE RAINBOW CLINIC PATIENTS
COMING IN FOR CONSULTATION AND
ALSO FOR FIRST OB VISIT AND ASKS
IF THEY WANT TO BE FOLLOWED
THROUGHOUT AND SHE FOLLOWS UP
WITH THEM.
WE SOMEWHERE THEM MEET WITH A
NUTRITIONIST AND THE STAFF ARE
TRAINED AND I'LL GET INTO THAT
IN MORE DETAIL.
A CHALLENGE HAS BEEN THE -- I
DON'T KNOW HOW MANY HAVE EPIC OR
ANOTHER EMR BUT THE EPIC
INTERFACE TO IDENTIFY PATIENTS
AS PART OF THE MAYO CLINIC HAS
BEEN CHALLENGING.
WE'VE PUT IN A PROBLEM LIST AND
COMING UP WITH A FLAG THAT CAN
BE ON THERE AND WE'VE BEEN
WORKING FOR A YEAR AND A HALF ON
THIS.
IT'S PROBABLY BEEN THE HARDEST
THING TO FIGURE OUT.
WE WANT SOMEBODY TO BE ABLE TO
SEE THAT.
THE WAY THAT THESE PATIENTS ARE
APPROACHED AND THE WAY THE STAFF
IS IMPORTANT TO KNOW THEY'RE
PART OF THE RAINBOW CLINIC.
WE STARTED WITH THE HALF DAY
WEEK WE'RE SEEING PATIENTS WITH
CONSULTATION AND WHEN THEY GET
PREGNANT THEY COME FOR THEIR
FIRST O.B. VISIT WITH A PLAN IN
PLACE THEY KNOW AND THE
SUBSEQUENT VISITS ARE
INCORPORATED INTO MY SCHEDULE
AND SOME OF MY COLLEAGUES'
SCHEDULES AS WELL AND WORKING ON
CONNECTING THE PATIENTS FOR A
SUPPORT GROUP.
THAT HASN'T HAPPENED YET BUT
WE'RE WORKING ON THAT.
THIS IS THE CURRICULUM.
THEY GO THROUGH DIFFERENT
MODULES AND IT'S ABOUT ACTUALLY
THE TRAINING IS ABOUT SIX HOURS.
AND WE HAD EVERY ONE OF OUR
FRONT DESK STAFF AND BILLERS AND
DOCTORS AND STENOGRAPHERS,
ANYBODY WHO INTERACTS IN THE
OFFICE AND CALL CENTER DID THE
TRAINING.
MANY TOLD US THEY GOD EMOTIONAL
AND HAD TO STOP AFTER A LITTLE
WHILE AND THEN COME BACK TO IT
BECAUSE IT WAS SO EMOTIONAL.
THEY DID THE TRAINING.
IT'S BEEN EIGHT MONTHS AND WE'RE
WORKING ON REPEATING THE
TRAINING AGAIN TO MAKE SURE
STAFF THAT HADN'T BEEN TRAINED
ARE BEING TRAINED AND THE WHOLE
IDEA IS THIS COURSE CURRICULUM
THEY'LL MAKE FREE OF CHARGE FOR
ANY PLACE THAT'S STARTING A
RAINBOW CLINIC.
WE'RE GETTING TO THE WORKUP THAT
WAS DONE OR GROWTH RESTRICTION
AND WE'LL WAS THERE EFFORTS OF
AN ACCIDENT WITH UNDERLYING
MEDICAL CONDITIONS WE NEED TO
OPTIMIZE PRIOR TO THE NEXT
PREGNANCY.
AND ANY SMOKING CESSATION OR
WEIGHT REDUCTION.
THE WEIGHT REDUCTION IS
DIFFICULT BECAUSE MOST THE
PATIENTS WHEN THEY COME FOR A
CONSULT AFTER HAVING A
STILLBIRTH WANT TO GET PREGNANT
AS SOON AS POSSIBLE SO I FOUND
THIS TO BE CHALLENGING.
IT TAKES A LONG TIME TO
ACCOMPLISH THAT AND THEY'RE NOT
WILLING TO WAIT A YEAR AND A
HALF UNTIL THEY CAN LOSE WEIGHT.
AND POTENTIAL THERAPIES AS
APPROPRIATE.
AND IF THERE'S DIABETES
OPTIMIZATION AND THINGS LIKE
THAT AND TALK ABOUT MONITORING
OF THE PREGNANCY.
WE'LL USUALLY SEE THEM EVERY
WEEK STARTING IN 28 WEEKS FOR
SURVEILLANCE AND COUNSELLING OF
FETAL MOVEMENT.
WE START WITH THE
PRECONCEPTIONAL HISTORY AND TRY
TO OBTAIN THE PLACENTAL
PATHOLOGY.
ULTRASOUND VIABILITY.
NOT SURE WHAT THAT SAYS.
WE TALK ABOUT DOING GENETIC
TESTING BECAUSE WON'T HAVE HAD
GENETIC TESTING DONE ON
STILLBIRTHS AND TALK ABOUT IT
AND MOST PATIENTS SEEM TO WANT
THAT IT GIVES A BIT OF PIECE OF
MIND AND MOST PATIENTS WILL DO
THAT.
FREQUENT ULTRA SOUNDS.
I HAVE TO SAY A LOT OF THE
PATIENTS WANT TO HAVE THE
ESTIMATED PLACENTAL VOLUME AND
WE'RE COLLECTING THE DATA TO SEE
IF IT CORRELATES WITH THE
PLACENTAL VOLUME AFTER DELIVERY.
FREQUENT ULTRA SOUNDS AND
ESTIMATED PLACENTAL VOLUME
ASSESSMENT.
THEN WE PLAN FOR DELIVERY.
OUR RECOMMENDATION IS 39 WEEKS
AND I AGREE THAT WITH THE
RATIONALE BUT IT'S HARD FOR
PATIENTS TO MAKE IT TO 39 WEEKS.
OFTEN THERE'S AN INDICATION FOR
SLIGHTLY EARLIER DELIVERY.
WE TRY TO PUSH IT TO 39 BUT IF
THEIR ANXIETY LEVEL YOU HAVE TO
BALANCE THAT WITH WHAT IS THE
BEST OUTCOME FOR THE PATIENT.
AND SUPPORT AROUND BIRTH AND THE
POSTPARTUM PERIOD.
I WANT TO GET MORE INTO THAT IN
A SECOND.
I THINK I HAVE THAT ON A FUTURE
SLIDE.
AS THE WORD GOT OUT OF THE
RAINBOW CLINIC AND WHILE WE
DON'T PUT THEM IN OUR STUDY WE
TAKE CARE OF THEM.
THESE PATIENTS HAVE HAD
RECURRENT MISCARRIAGES WERE
DISTRAUGHT OR HAD PRETERM
DELIVERY.
THEY WANT THE SAME KIND OF PAIR
WHERE PEOPLE KNOW THEM AND FEEL
THEY HAVE EXTRA ATTENTION AND
THEY'LL NEED A MORE FREQUENT
ASSESSMENT FOR RISK OF PRETERM
DELIVERY WE SEE THEM IN THE
CLINIC AS WELL.
OUR PHONE NUMBER AND WE TRY TO
GET SOMETHING WITH RAINBOW.
THE BEST WE COULD DO IS 824 ARBO
AND THAT OUR SIGN.
WE HAVE OUR IRB TO TRACK OUR
OUTCOMES WE'LL ALSO BE ABLE TO
GET DATA IF IT WAS AN INDICATED
CAUSE FOR THE PRETERM BIRTH.
WE STARTED SEEING PATIENTS IN
APRIL 2022.
STARTING WITH HALF DAYS A WEEK
AND NOW IT'S TWO.
MOSTLY STARTING WITH
PRECONCEPTIONAL CONSULTATIONS.
WE'VE SEEN OVER 80 PATIENTS
SINCE THEM AND 40 OB APPRECIATES
AND THREE DELIVERIES SO FAR.
WE WANT TO KNOW WHAT WE'RE DOING
RIGHT AND WRONG AND HOW TO
IMPROVE.
WE HAVE TO ENSURE REPEAT
TRAINING AND I HAD A STENOGRAPHY
WHO RECENTLY WE'RE TRAINING HER
TO WORK IN A LOCATION AND NEVER
UNDERWENT THE TRAINING AND TOOK
A RAINBOW PATIENT IN AND WAS
ASKING HER ALL THE THINGS SHE
SHOULD BE ASKING SO WE NEED TO
MAKE SURE WE'RE TRAINING NEW
STAFF AND FOUND MOST THE
PATIENTS WANT TO SEE THE SAME
STENOGRAPHY AS MUCH AS POSSIBLE
AND WE HAVE THEM SEE THE SAME
STENOGRAPHY OR ONE OF TWO
BECAUSE THEY'RE THERE SO
FREQUENTLY.
WE HAVE TO TRAIN WHAT WE'RE
DOING ANTEPARTUM TO POSTPARTUM
AND THIS CAME AS FEEDBACK FROM
THE FIRST PATIENT THAT DELIVERED
BECAUSE THERE WASN'T THE SAME
ATTENTION THAT WAS GIVEN
ANTEPARTUM AND WE HAVE FOOT WE
PUT OWN THE BOARD AND WE MOVED
TO AN ELECTRONIC BOARD IF
THEY'RE A RAINBOW PATIENT.
EVERYBODY'S GETTING TRAINED.
WE'RE PRIORITIZING PRIVATE ROOMS
AND WE DON'T HAVE FIVE ROOMS FOR
EVERY PATIENT BUT THEY KNOW THE
RAINBOW CLINIC PATIENTS GET
PRIORITY.
AND FOLLOW-UP WITH THE
PHYSICIAN.
WHAT CAME UP IS YOU THINK YOU'RE
HANDING THEM THIS HEALTHY BABY
AND ALL THE PROBLEMS GO AWAY BUT
IT'S NOT.
THERE'S A LOT OF EMOTION AND
THEY'RE HOLDING THIS HEALTHY
LIVING CHILD BUT THEN BRINGING
UP EMOTIONS OF WHAT THEY LOST.
THIS IS WHAT THEY SHOULD HAVE --
THIS IS A CHILD THEY SHOULD HAVE
HELD TWO YEARS AGO.
THERE'S A LOT OF MIXED EMOTIONS
OVER THAT WE FOLLOW-UP WITH THEM
IMMEDIATELY WITH A SOCIAL WORKER
OR TALK TO THEM WITHIN A WEEK.
AND ELICITING THE FEEDBACK FROM
PATIENTS IS A WAY OF CHANGING
THINGS.
IT STRUCK ME WHEN DR. GOLD WAS
SHOWING THE PICTURE AND THE
PHOTOGRAPHY OF THE STILLBIRTHS
AND THE PHOTOGRAPH OF THE
STILLBORN BABY PUT IN A -- LIKE
IN A MAILBOX OR SOMETHING LIKE
THAT AND I HAD A PATIENT THAT
SHOWED ME THE PICTURE OF HER
STILLBORN BABY.
SO WE'RE ALSO WE HAVE A WHOLE
BEREAVEMENT KIT BUT WE'RE ALSO
WORKING TO IMPROVE THAT AS WELL
MAKING SURE THAT IF PATIENTS ARE
HAVING A STILLBIRTH DON'T HAVE
THAT KIND OF EXPERIENCE.
WE HAD ONE PATIENT WHO WAS PUT
IN THE LABOR ROOM AND COULD HEAR
BABIES BEING BORN AND TRYING TO
WORK ON HAVING THEM AS FAR AS
POSSIBLE.
LITTLE THINGS LIKE THAT THAT ARE
BIG DEAL TO OUR PATIENTS.
WE'RE FOCUSSED ON IMPROVING THE
PATIENT EXPERIENCE.
REDUCING THE FEAR AND ANXIETY
ADDING TO THE BODY OF RESEARCH
OUT THERE AND HOPEFULLY
IMPROVING OUTCOMES IN REDUCING
STILLBIRTHS.
ONCE WE HAVE A REASONABLE NUMBER
OF PATIENTS WE'LL BE ABLE TO
COMPARE OUR OUTCOMES WITH THE
OUTCOMES THAT DR. HAZEL HAS
PUBLISHED.
THANK YOU SO MUCH FOR THE
OPPORTUNITY TO SPEAK TODAY.
>>THANK YOU SO MUCH AND NOW
WE'RE ADDING TO OUR OPEN PANEL
FOR THE DISCUSSION IN THE
INSIGHTFUL PRESENTATION.
BURY START I WOULD LIKE KNOW IF
OUR CHAIR DR. JAIN OR REDDY
WOULD LIKE TO ADD SOMETHING.
>>THANK YOU, DR. LONGO.
THESE WERE AMAZING PRESENTATIONS
AND LOOK FORWARD TO THE
DISCUSSION WITH THE PANEL
MEMBERS.
PERHAPS, MONICA, IF I CAN GET
THE DISCUSSION STARTED.
I HAVE A QUESTION FOR
DR. BARFIELD AND ADDA REGARDING
PRAMS AND SOARS.
WHAT WOULD IT TAKE TO IMPLEMENT
SOARS FOR THE ENTIRE COUNTRY?
AND PARTICULARLY DR. BARFIELD
SAID SHE MAY HAVE THE HISTORICAL
PERSPECTIVE.
WHY WASN'T STILLBIRTH INCLUDING
OF INCLUDED IN THE PRAMS
DATABASE FROM EARLY ONSET OF THE
PROGRAM BECAUSE THAT WOULD HAVE
SET THE STAGE FOR ALL THIS VITAL
INFORMATION TO BE CAPTURED.
>>THAT'S A REALLY IMPORTANT
QUESTION AND I WILL HAVE
DR. DIEKE ANSWER THE FIRST SO
I'LL ANSWER THE SECOND.
IN TERMS OF UNDERSTANDING PRAMS
AND THE PARTICIPATION RATE IN
GENERAL PRAMS IS A HIGH
PARTICIPATION RATE.
WOMEN AND BIRTHING PEOPLE WANT
TO SHARE THEIR EXPERIENCES.
IF YOU CAN FIND THEM.
IF THEY'RE NOT BACK AT WORK OR
OTHER AREAS, THEIR RESPONSE IS
REALLY VERY GOOD.
AT THE TIME WE DID NOT
UNDERSTAND WHAT WOULD BE THE
RESPONSE AND WHAT WOULD BE THE
APPROPRIATE SENSITIVITY FOR
ASKING QUESTIONS AMONGST
BIRTHING PEOPLE WHO HAVE
EXPERIENCED AN INSTANT LOSS IN
THE FIRST CASE AS WELL AS A
STILLBIRTH.
WE NEEDED TO EXPLORE THAT.
PRAMS FROM THE INCEPTION HAS
BEEN INCREDIBLY SENSITIVE TO
INFANT DEATHS AS THEY'RE
SAMPLING AND GATHER THE
INFORMATION WHETHER IT'S FINDING
IT FROM HOSPITAL RECORDS OR
REPORTS OR FROM INFORMATION THAT
MAY BE SHARED PUBLICLY AND SHARE
APPROPRIATE CARDS, CONDOLENCES,
INCENTIVES AND ASK RESPONDENTS
IF THEY'RE STILL INTERESTED IN
PARTICIPATING IN THE SURVEY.
WE HAVEN'T MADE MUCH TRACTION IN
TERMS OF STILLBIRTH.
IT SEEMED LIKE AN IMPORTANT
QUESTION.
THAT'S THE OPPORTUNITY DR. DIEE
KE EXPLAINED.
WE'RE ALL BETTER TRYING TO
UNDERSTAND AND WHY IS IT THESE
COMPONENTS THEY'RE INTERRELATED.
WE DO DO SURVEILLANCE ON
MATERNAL MORTALITY AND SUDDEN
UNEXPECTED INFANT DEATH.
HOW CAN WE THINK ABOUT THESE
CONTINUOUSLY BUT NEED TO
ACKNOWLEDGE THERE MAY BE
DIFFERENT SKILL SETS NEEDED IN
TERMS OF THE EXPERTISE AND
INVOLVEMENT OF REVIEW PANELS.
THE APPROPRIATE DIAGNOSIS AND
THE RESEARCH TO UNDERSTAND THE
UNDERLYING ISSUES.
IN TERMS OF THE COST DR. DIEKE
MAY WANT TO TALK ABOUT THAT AS
WELL.
I'LL HAND IT TO YOU.
WITH THE STILL BIRTH FUNDING
IT'S BEEN LIMITED IN TERMS OF
OUR ABILITY TO FUND THE PILOT.
I BELIEVE THE FIRST PILOT WAS
AROUND $100,000 OR LESS TO GET
THE PARTNERS AND SYSTEMS ARE
READY TO COLLECT THIS
INFORMATION.
AND WE WERE ABLE TO FUND
STILLBIRTH LONGER BUT I WANT TO
MAKE A CLARIFICATION IT'S FOR
THREE YEARS OF FUNDING DURING
OUR FIVE-YEAR NOTICE OF FUNDING
AWARD OPPORTUNITY.
BUT STILL, WE HAD ONE APPLICANT.
WE JUST HAD ONE STATE APPLY.
THAT IS SOMETHING THAT WE'RE
ALSO TRYING TO UNDERSTAND FROM
THE SITE PERSPECTIVE.
THERE'S SOME SITES THAT HAVE
GREAT COMMITTEES.
I LEARNED THIS THROUGH THE
STILLBIRTH COUNCIL MEETING.
THERE WERE OTHER STATES THAT HAD
STRONG STILLBIRTH COMMITTEES.
I THINK IT WILL BE A PARTNERSHIP
TO CONSIDER WHETHER THOSE
STILLBIRTH COMMITTEES IN THOSE
STATES ARE ALSO OPEN TO CONSIDER
APPLYING TO THE LIMITED CDC
FUNDING.
OF COURSE, IF WE COULD GET
ADDITIONAL FUNDING IT WILL MEAN
ADDITIONAL OPPORTUNITIES TO
EXPAND STILLBIRTH STUDIES FROM
OUR END.
>>ONE THING TO NOTICE, WE HAVE
TO BE COGNIZANT OF WHAT RECENT
YEARS HAVE DONE IN TERMS OF
IMPACTING CAPACITY AND I'M SURE
OUR COLLEAGUES FROM HRSA CAN
TALK TO THAT AS WELL.
IT'S BEEN AN ALL HANDS ON DECK
FOR THE MCH COMMUNITY INCLUDING
GRANTS.
SOMETIMES IN TERMS OF APPLYING
FOR THE OPPORTUNITIES, GROUPS
HAVE TO THINK ABOUT WHAT THEIR
CAPACITIES IS TO BE ABLE TO
IMPLEMENT.
>>I DID A QUICK CALCULATION
FROM DR. DIEKE'S PRESENTATION I
HEARD 81% OF LIVE BIRTHS ARE
CAPTURED IN PRAMS THAT'S 3
MILLION BIRTHS THAT WOULD BE
CAPTURED.
HOW MUCH WOULD IT BE TO ADD
24,000 STILLBIRTHS TO PRAMS?
WHY CAN'T WE DO IT AS A NATIONAL
INITIATIVE AND WE DON'T HAVE TO
HAVE DUPLICATIVE SERVICES.
I SEE KATHERINE SHAKING HER
HEADS WHICH ALWAYS GIVES ME
CONFIDENCE I'M ASKING THE RIGHT
QUESTION.
>>DO YOU WANT TO TAKE THAT?
I THINK HE'S PROBABLY ASKING A
RHETORICAL QUESTION.
>>THIS IS A COOPERATIVE
AGREEMENT BETWEEN JURISDICTIONS
AND CDC AND WE ALSO NEED SUPPORT
BECAUSE OTHER SYSTEMS INCLUDE
MATERNAL MORTALITY REVIEW
COMMITTEES ON WORK ON SUDDEN
UNEXPECTED DEATH AND MORTALITY
SURVEILLANCE AND OTHER AREAS.
GIVEN RESOURCES THAT COULD BE A
POTENTIAL OPPORTUNITY TO LOOK AT
THE AREA.
WE HAVE TO THINK THOUGHTFULLY
ABOUT PARTICULARLY JURISDICTIONS
THAT MAY HAVE LIMITED CAPACITY
IN TERMS OF DIVERSITY OF
RECIPIENTS, PARTICIPANTS.
THOSE ARE IMPORTANT POINTS.
WITHIN PRAMS, IT HAS DIVERSE
REPRESENTATION AND WHAT'S THE
CADRE OF PEOPLE TO PARTICIPATE
IN TERMS OF TRUST AND ACCESS AND
THE MODE?
WE NEED TO MAKE SURE WE DON'T
LEAVE CERTAIN GROUPS BEHIND.
>>GREAT.
I WANTED TO ALSO INVITE DR. UMA
REDDY BEFORE WE OPEN IT TO
EVERYONE ELSE TO SEE IF SHE HAD
QUESTIONS OR COMMENTS.
>>THANK YOU.
>>THANK YOU TO THE SPEAKERS.
FANTASTIC TALKS.
A LOT TO THINK ABOUT.
SOARS IS A FANTASTIC PROJECT AND
LINKING IT TO THE INFORMATION WE
HEARD AS YOU SAID ABOUT OTHER
STATES WITH PROJECTS, EXTENSIONS
OF BIRTH EFFECTS REGISTRY, IN
TERMS OF WE TALKED ABOUT HOW WE
NEEDED IN DEPTH INVESTIGATIONS
OF STILLBIRTHS TO MAKE PROGRESS
AND WE HEARD ABOUT FROM SOME
STATE PROJECTS AND ASKING THE
QUESTIONS SOARS DOES AND BEING
ABLE TO DO LABORATORY TESTING.
AND THE NETWORK WAS ABLE TO DO
THAT AND THERE WAS A MATERNAL
INTERVIEW WHICH WAS A KEY
COMPONENT GOING TO YOUR POINTS
THAT WE NEED TO TALK TO OUR
FAMILIES AND PREGNANT WOMEN WHO
SUFFERED STILLBIRTH AND TRIED TO
UNDERSTAND.
AND DR. CACCIATORE, TOO BAD SHE
LEFT, SHE DID FOCUS GROUPS TO
FORM THE MATERNAL INTERVIEW THAT
WAS USED FOR SCREEN.
THAT KEY COMPONENT -- THERE'S
OTHER FACTORS INFLUENCING WHY
STILLBIRTHS HAPPEN AND TO
COMBINE THAT AND TO
DR. BARFIELD'S POINT IT'S HARD
TO APPLY TO A GRANT FROM A
COMMUNITY ORGANIZATION OR EVEN
AN INSTITUTION UNDER RESOURCES
FOR SCREEN.
THE STILL BIRTH COLLABORATIVE
RESEARCH NETWORK IS BECAUSE THEY
WERE PARTNERED WITH AN ACADEMIC
INSTITUTION WE WERE ABLE TO DO
POPULATION-BASED STUDIES.
LIKE THE COUNTY FOR EXAMPLE, IT
HAD TWICE THE STILLBIRTH RATE OF
EVERY OTHER COUNTY IN THE
STILLBIRTH COLLABORATIVE
RESEARCH NETWORK AND REALLY
BECAUSE EMORY PAIRED WITH THE
COMMUNITY HOSPITALS IN THE
STUDIES.
THANK YOU ALL AND IF IF WE CAN
GET A COMBINATION OF THE FACTORS
FROM SOARS AND FROM THE BIRTH
DEFECTS REGISTRY WE WOULD MAKE
GOOD PROGRESS.
THANKS.
>>
>>THIS QUESTION IS FOR
DR. GOLD.
KATHERINE, 45 YEARS AGO IN
MEDICAL SCHOOL WHEN MY OLDER
BROTHER AND HIS WIFE LOST A BABY
AND I KNOW MY SISTER AND MOM
GRIEVED FOR A LONG TIME.
MY BROTHER YEARS LATER EXPRESSED
TO ME HOW HE WAS STILL
STRUGGLING WITH THAT SADNESS AND
SOR
SORROW.
WE SELDOM TALK ABOUT PATERNAL
GRIEF AFTER STILLBIRTH.
WOULD YOU MIND MAKING A COMMENT
HOW WE CAN ADDRESS THAT AS WELL?
>>I THINK THAT'S A GOOD
COMMENT.
WE'RE ONLY IN THE LAST FIVE OR
10 YEARS STARTING TO GET MORE
DATA ABOUT THE GRIEF OF FATHERS
AND THE NON-BIRTHING PARTNER IF
YOU HAVE A SAME-SEX COUPLE.
IN GENERAL AND THIS IS A
SWEEPING GENERALIZATION FROM THE
STUDIES I'VE SEEN, MEN AND WOMEN
HAVE DIFFERENT KINDS OF GRIEF
AND DIFFERENT EXPRESSIONS.
WOMEN TENDED TO HAVE MORE
PROLONGED POORER OUTCOMES AFTER
STILLBIRTH THAN MEN HAVE.
AGAIN IT'S ABOUT IDENTIFYING THE
FATHERS WHO ARE MOST AT RISK
LIKE WE'RE TRYING TO IDENTIFY
THE MOMS MOST AT RISK AND MY
GUESS IS THE FATHERS WITH PRIOR
TRAUMATIC LOSSES, EXPERIENCING
UNANTICIPATED DEATHS ARE AT
HIGHER RISK AND WE NEED TO
IDENTIFY THAT.
WHEN I MEET WITH FAMILIES I SAY
YOU'LL GRIEVE AT DIFFERENT WAYS
AND TIMES BUT NOT MANY HOSPITALS
ARE TALKING TO PARENTS ABOUT HOW
THEY MIGHT GRIEF DIFFERENTLY AND
WHAT NORMAL GRIEF LOOKS LIKE FOR
PEOPLE.
THAT'S AN IMPORTANT COMPONENT
THAT'S BEEN NEGLECTED.
IT'S NOT JUST MEN.
I THINK IT'S RECOGNIZING THERE'S
DIFFERENT BACKGROUNDS AND
LOOKING AT LGBT COUPLES AND
GROUPS WE MAY NOT HAVE PAID AS
MUCH ATTENTION TO IN TERMS OF
LOSS.
>>THANK YOU.
>>I THINK WE'VE ADDRESSED SOME
QUESTIONS IN THE CHAT.
THANK YOU.
IT SEEMS WE WOULD LIKE TO HEAR
YOUR OPINION ABOUT FETAL
MOVEMENT.
YOU PUT IN YOUR PRESENTATION AS
PART OF AWARENESS.
CAN YOU GIVE MORE HOW DEATH
COULD FALL INTO CONSIDERATION OF
THE RISK FACTOR YOU'RE
EVALUATING AND WHAT DO YOU THINK
WOULD BE THE BEST WAY?
AS WE KNOW THERE'S REALLY NOT A
GOOD EVIDENCE BASE.
WE DON'T HAVE CLEAR DATA BUT
THERE'S NOT GOOD ANALYSIS
SHOWING WE CAN REALLY PREVENT
PRENATAL DEATH UNFORTUNATELY.
HOW CAN YOU JOIN THE DISCUSSION
WITH YOUR WORK.
>>THE WAY WE THINK ABOUT IT IN
THE CONTEXT OF THE HEAR HER
CAMPAIGN THERE ISN'T NECESSARILY
ONE SINGLE FACTOR THAT'S GOING
TO DETERMINE DEFINITIVELY THERE
IS SOMETHING GOING ON WITH A
PREGNANCY OF CONCERN.
IT'S MORE ABOUT LISTENING.
IF SOMEONE IS CONCERNED ENOUGH
THEY'RE TRYING TO SEEK HELP AND
THEY'RE BEING TURNED AWAY OR
IGNORED OR SYMPTOMS AND I CAN
TELL YOU SEVERAL ANECDOTES AS A
NEONATOLOGIST WHERE WOMEN HAVE
COME BACK TO THE EMERGENCY ROOM
MORE THAN ONCE BECAUSE THEIR
CONCERNS ABOUT THEIR BABY'S
MOVEMENT.
>>I WILL SAY THERE'S SO MUCH
OUT THERE IN THE STILLBIRTH
COMMUNITY ABOUT FETAL MOVEMENT.
IT'S HARD TO TRY TO TELL THEM
THE SCIENCE ISN'T THERE.
I AGREE.
I THINK YOU CAN'T DISMISS IT AND
WE HAVE TO SAY LISTEN AND IF
YOU'RE CONCERNED, COME IN, GET
CHECKED.
YOU NEED TO SHOW THAT KIND OF
SUPPORT OTHERWISE YOU DON'T HAVE
THEIR TRUST.
AND WE DO NEED MORE.
WE 100% NEED MORE INFORMATION
ABOUT THIS.
RETROSPECTIVE STUDIES CAN'T DO
IT YOU NEED TO LOOK AT PATTERNS
AND THINGS LIKE THAT.
WE HAVE TO LISTEN TO PATIENTS.
I TOTALLY AGREE.
>>IS THERE MORE TO ADD?
>>NOTHING TO ADD.
AS YOU, WE DO HAVE A FEW
QUESTIONS ON THE SOURCE SURVEY
AROUND FETAL MOVEMENT BUT THIS
IS AFTER THE OUTCOME HAS
HAPPENED.
NOTHING DIFFERENT FROM WHAT HAS
ALREADY BEEN SAID.
OVER.
>>ANECDOTALLY FROM WORKING FROM
MY CLINIC IN DETROIT.
WE'RE WORKING WITH MOMS WITH NO
MONEY, NO INSURANCE, LITTLE
SOCIAL SUPPORT.
WE'VE SEEN TERRIBLE OUTCOMES AND
THE NUMBER OF TIMES WE SEND MOMS
TO THE HOSPITAL BECAUSE THEY IS
SOMETHING CONCERN AND GET SENT
AWAY BECAUSE THEY DON'T HAVE
THEIR INSURANCE CARD IN HAND OR
CHILD IN TOW IS HEARTBREAKING.
WE JUST A COUPLE MONTHS AGO
SENTMAN TO THE HOSPITAL BECAUSE
HER POSTPARTUM BLOOD PRESSURE
WAS HIGH AND SHE WAS 17 AND
DIDN'T HAVE A PARENT WITH HER
AND THEY SENT HER HOME.
WE SEE THAT OVER AND OVER AND
OVER.
THE HEAR CAMPAIGN IS ABOUT
LISTENING TO PATIENTS AND
EMPOWERING PATIENTS TO KEEP
SPEAKING UP IF THEY'RE WORRIED.
THAT'S A CRITICAL PIECE.
>>WE NEED BETTER EDUCATION.
WE NEED BETTER TRAINING FROM
BOTH PROVIDERS AND A WAY TO
COMPORT THE BRIEFING AND
SUPPORT.
HOW DO YOU ENVISION WE COULD ASK
THE TASK TO ELUCIDATE WHAT WE
WOULD LIKE IT IMPLEMENT YOU
WOULD LIKE TO SEE THAT WILL
ANSWER THE QUESTIONS?
>>ARE YOU ASKING ABOUT THE
KINDS OF RESEARCH THAT WOULD
LOOK AT TRAINING?
>>THE EDUCATION AND TRAINING
YOU WOULD LIKE IT INCLUDE THAT.
WA DO YOU THINK WOULD LEAD TO AN
OVER ALL --
>>I CAN COMMENT.
OTHERS MAY HAVE DIFFERENT
PERSPECTIVES.
I THINK WE NEED TO USE THE
EXPERIENCES OF PARENTS TO TRAIN
HEALTH CARE PROFESSIONALS.
WHEN YOU HAIR WHAT WAS HELPFUL
AND PAINFUL, THAT'S WHAT MAKES
THE DIFFERENCE FOR THE HEALTH
CARE PROVIDERS.
IT'S OFTEN HARD TO REALIZE WHAT
DO YOU IMPACTS A FAMILY UNTIL
THEY COME BACK AND TELL YOU.
I WILL SAY I'VE BEEN IN SETTINGS
WHERE PARENTS HAVE COME AND
SPOKE TO DOCTORS AND DOCTORS ARE
DEFENSIVE ABOUT BEING TOLD
BECAUSE PATIENTS MAY NOT
UNDERSTAND THE OTHER SIDE BUT
THERE'S WAYS TO THOUGHTFULLY AND
SENSITIVELY BRING THE STORIES
FOR WARD TO NOT JUST PHYSICIANS
AND MIDWIVES AND NURSES.
THE RESEARCH STUDIES ON
HOSPITALS AND THERE'S A MARKER
TO INDICATE THERE'S A RAINBOW
FAMILY.
SOMEONE MIGHT WALK IN THE ROOM
AND SAY THINGS LIKE ARE BREAST
FEEDING, DO YOU WANT SOMETHING
FOR YOUR BABY, CONGRATULATIONS.
WE NEED TO MAKE TRAINING MORE
UNIVERSAL AND WITH THE VOICES OF
PARENTS.
>>GIVEN THE IMPLEMENTATION OF
SOARS IN UTAH DO YOU HAVE
THOUGHTS HOW IMPACTFUL SOARS HAS
BEEN IN ADDRESSING THE
PSYCHOLOGICAL IMPACTS IN --
>>WE'VE OFFERED THE PEOPLE WHO
PARTICIPATE IN SOARS A NO-COST
CONSULTATION ABOUT THEIR
STILLBIRTH AND A SUBSET OF
PATIENTS HAVE DONE THAT AND WE
CAN ADDRESS THEIR PSYCHOSOCIAL
NEEDS AND MAKE REFERRALS AND
ADDRESS THOSE ISSUES.
FOR THOSE PATIENTS WHO DON'T DO
THAT IT'S A MATTER OF THEM
FILLING OUT THE FORMS.
THE BEAUTY OF SOARS IS WE CAN
ASK QUESTIONS AND GET
INFORMATION WE CAN'T OTHERWISE
GET AND BUT THERE'S AN
OPPORTUNITY AND SEE PEOPLE OR
MEETING THEM AT THE POINT OF
CONTACT WHEN THEY HAVE THEIR
BABY TO PLUG THEM IN THE
PSYCHOSOCIAL SUPPORT SERVICES.
>>WE CAN'T HEAR YOU DR. JAIN.
>>SINCE WE HAVE YOU ON THE
SCREEN, OB PROGRAMS ACROSS THE
COUNTRY DO PRE-DELIVERY
DEPRESSION SCREENING IN MOTHERS
TO BE ABLE TO PREDICT HOW BAD
POSTPARTUM ISSUES ARE GOING TO
BE WHICH GET EXAGGERATED IN THE
EVENT OF A DEATH?
>>I'M NOT 100% SURE BUT I WOULD
BE FLABBERGASTED IF EVERYONE
CENTER DOESN'T DO DEPRESSION
SCREENING.
WE DO IT AT EVERY SINGLE VISIT
AND IT'S HARD TO IMAGINE OTHERS
DON'T AS WELL.
CERTAINLY KATIE AND JOANNE AND
OTHERS AND UMA CAN SPEAK TO THAT
AS WELL.
>>DR. STONE, HOW ABOUT YOUR
PROGRAM?
>>FOR GENERAL OBSTETRICS THEY
DO IT INITIALLY AND IT'S
INTERESTING THAT HAS VALUE AND
POSTPARTUM WE DO TWO WEEKS AND
SIX WEEKS POSTPARTUM.
I THINK THE DEPRESSION SCREENING
IS SO VALUABLE AND IT'S VERY
DIFFERENT.
MEDICAID REQUIRES IT AS
DIFFERENT TIME INTERVALS.
IF YOU LOOK AT PATIENTS WHO HAVE
HAD COMMERCIAL INSURANCE THEY
OFTEN DON'T HAVE IT.
>>A QUICK COMMENT AS A
LOGISTICAL THING, IF YOU DID DO
THE SCREENING AT 28 WEEKS AND
LATER ON IN THE THIRD TRIMESTER.
NOT EVERY VISIT BUT WE TRY TO
GET IT IN IN TERMS OF DR. GOLD,
YOU DID A PAPER IN 2007, 15
YEARS AGO WHERE YOU DID
META-ANALYSIS OF WHAT FAMILIES
VALUE IN BEREAVEMENT CARE AND
THAT PAPER IS STILL TRYING TO
IMPLEMENT WHAT YOU WROTE ABOUT
HOW TO TAKE CARE OF A FAMILY
THAT'S SUFFERED A STILLBIRTH.
TAKING FOOT PRINTS AND TAKING
PHOTOGRAPHS.
THE ARTICLE WAS RESEARCH YET THE
LEVEL OF DETAIL WHEN THERE'S
BEEN TWIN PREGNANCY AND ONE IS
STILLBIRTH AND LIVE BIRTH AN
TAKING PICTURES TOGETHER OF THE
SIBLINGS TOGETHER.
IN FORMS OF BEREAVEMENT TRAINING
THERE'S PLENTY OF PROGRAMS AND
BEING ABLE TO PROVIDE THE CARE
NOT JUST IN A BIG ACADEMIC
HOSPITALS BUT THROUGHOUT THE
COUNTRY.
I WANTED TO ACKNOWLEDGE THAT
PAPER WAS LIKE THE FIRST I HAD
SEEN AT THE TIME.
IN THE
>>IN THE RECENT SURVEY I ASKED
ABOUT THINGS PATIENTS WANT TO
TRY TO GET A SENSE OF HOW OFTEN
THEY'RE GETTING PICTURES OR
INVITED TO SEE OR HOLD THEIR
BABY.
WHAT I FOUND WAS PRONOUNCED
DIFFERENCES DEPENDING ON THE
VOLUME OF DELIVERIES OF THE
HOSPITAL WHICH WAS SURPRISING
BUT THE FIRST TIME I SAW DATA.
A BIG ACADEMIC INSTITUTION
PROBABLY HAS A ROBUST
BEREAVEMENT PROGRAM AND THEY'RE
STILL SEEING MORE STILLBIRTHS
AND CARING FOR MORE COMPLICATED
PREGNANCIES BUT THERE ARE THINGS
THAT CAN HAPPEN AT SMALLER LOWER
VOLUME HOSPITALS THAT ARE NOT
HIGH COST AND SOMETHING I THINK
I'D LIKE TO SEE DISSEMINATED AND
WOULD LIKE TO SEE RESEARCH HOW
THOSE THINGS IMPACT FAMILIES.
>>THAT SEEMS LIKE A GOOD WAY TO
IMPLEMENT THE STUDIES.
>>I HAVE A QUESTION FOR KATIE
OR JOANNE AND ANYBODY WHO HAS AN
ANSWER AND PEOPLE MAY HAVE
TOUCHED ON THIS BUT IN SOME
CASES IT SEEMS AS THOUGH WE TALK
ABOUT BEREAVEMENT AND DEPRESSION
AND ANXIETY, IT SEEMS AS THOUGH
A SUBSET OF PATIENTS EXPERIENCE
PTSD IT SEEMS TO BE WHAT THE
CRITERIA ARE.
IT SEEMS THE INTERVENTIONS MAY
BE APPLICABLE TO THIS
POPULATION.
I'D LOVE TO HEAR KATIE AND
JOANNE AND ANYBODY ELSE WHO HAS
A THOUGHT ABOUT THAT.
WOULD LOVE TO HEAR THE OPINION.
THANKS.
>>YOU'RE CORRECT A SOCIAL
WORKER DOES AN ASSESSMENT AND
WE'LL REFER OUT IF THERE'S
FURTHER ALARM.
I THINK THEY'RE SO TRAUMATIZED
FOR THE NEXT PREGNANCY THE LEVEL
OF ANXIETY IS SO HIGH AND
NOTHING WILL TAKE THAT AWAY
UNTIL THEY DELIVER.
DELIVERY ISN'T EVERYTHING
BECAUSE AFTER THE BIRTH IS STILL
RELIVING A TRAUMA FOR THEM
THOUGH THEY'RE HAPPY.
THE PSYCHOSOCIAL SUPPORT IS
INCREDIBLY IMPORTANT AND AS ALL
OF YOU HAVE SAID THERE'S SO MANY
THINGS WE CAN LEARN FROM
PATIENTS.
PATIENTS WANT TO KNOW THAT THEIR
CHILD IS RECOGNIZED.
THEY WANT YOU TO MENTION AND WE
ASK WHAT'S THE NAME OF THE CHILD
AND KEEP IT IN THE CHART TO SAY
CJ DELIVERED ON THIS DAY.
WE HAVE IT DOWN TO RECOGNIZE I'M
SORRY IT MUST BE A DIFFICULT
TIME BECAUSE WE KNOW THE
BIRTHDAY'S COMING UP.
AND THIS IS A LIST OF DOS AND
DON'TS.
WE NEED TO DO MORE IN TERMS OF
IN FIGURING OUT WAYS TO EDUCATE
PEOPLE AND LETTING THEM KNOW THE
THINGS IMPORTANT FOR OUR
PATIENTS WHO HAVE HAD
STILLBIRTHS AND HOW WE CARE FOR
THEM IN THE NEXT PREGNANCY.
THEY HAD A TERRIBLE TRAUMA.
>>WE LEARNED HAVING HIGH
ANXIETY IS AN ENORMATIVE
RESPONSE AND I TALK TO PATIENTS
ABOUT THAT BEING NORMATIVE AND
THAT'S OKAY.
WHAT WE KNOW FROM THE DATA IS
THAT CAN TENDS TO GET BETTER
AFTER PEOPLE DELIVER.
I WORRY ABOUT THE PTSD THAT MAY
PERSIST AFTER THE SUBSEQUENT
BIRTH OF A HEALTHY CHILD.
THERE'S A DIFFERENCE BETWEEN
NORMAL ANXIETY AFTER A BAD
OUTCOME AND HAVING PERSISTENT
PTSD OUTCOMES AND I MENTIONED
THEIO -- THE YOGA TRIAL AND
THERE WAS NO CHANGE BUT THERE'S
LITTLE RESEARCH OUT THERE.
IT'S A GOOD QUESTION.
>>MONICA, I KNOW IT'S BEEN A
LONG SESSION AND WE CAN HAVE AN
EARLIER BREAK BUT THERE'S
QUESTIONS IN THE CHAT BOX.
I WONDER IF SHE'S ABLE TO UNMUTE
AND GIVE HER THOUGHTS ON THE
REGISTRY.
TO DR. BARFIELD, I THINK
QUESTIONS KEEP COMING BACK TO
THE IMPORTANCE OF HAVING
REGIONAL OR NATIONAL REPOSITORY
OF INFORMATION THAT CAPTURES ALL
THIS DATA SO MEANINGFUL
ASSOCIATIONS CAN BE TESTED AND
IF THERE WERE A DATA BANK A BIO
REPOSITORY COULD BE MADE FOR
ADVANCES.
THANK YOU FOR THE MEANINGFUL
PRESENTATIONS SO FAR THIS
MORNING.
IT'S BEEN VERY NICE TO LISTEN
TO.
I THINK MY MAIN POINT I'M TRYING
TO GET ACROSS IS THE IMPORTANCE
OF HAVING POPULATION-BASED
RESEARCH BECAUSE I DO THINK AS
MENTIONED SEVERAL TIMES THIS
MORNING IT'S IMPORTANT TO NOT
ONLY TALK TO WOMEN THAT LOOK
LIKE ME, WHITE, HIGH EDUCATED.
I THINK WE CAN ONLY DO THAT IF
WE START FROM THE FOUNDATION OF
A POPULATION-BASED REGISTRY.
WITH THAT THOUGH WE CAN ONLY DO
THAT IF WE HAVE THE FOUNDATION
OF IDENTIFYING CAUSES AND
GETTING THE AUTOPSIES AT BIRTH
AND THE INFORMATION IN THE
MEDICAL RECORD IN A WAY THAT
THEN WE CAN BUILD A STILLBIRTH
REGISTRY ON TOP OF THAT BUT IT
WOULD OFFER OPPORTUNITIES TO
LOOK BACK THE WORK THAT I'VE
DONE AT CDC LOOKING AT POTENTIAL
CAUSES OF STILLBIRTH AND ALSO DO
THE IMPORTANT WORK IN FOLLOWING
UP AND SEEING HOW THE EXPERIENCE
OF THESE WOMEN HAVE BEEN AND
WHAT ARE EXPERIENCES DIFFERENT
WOMEN FACE AS THEY HAVE A
STILLBIRTH AND SO BUT I DO THINK
IT HAS TO START WITH A REGISTRY.
>>YOU BRING UP IMPORTANT
POINTS.
IT WOULD ALSO BE GOOD TO HEAR
FROM SOME OF THE OTHER PANELISTS
ABOUT WHAT THAT PROCESS
INVOLVES.
WE TALKED ABOUT TRAINING AND
HONESTLY WE'D LOVE IT TO BE A
SCIENCE BUT IT'S A LOT OF ART.
THERE'S MODELLING AND TEACHING
AN TRAINING THE CIRCUMSTANCES
AND THERE COULD NECESSITATE A
HANDOFF BETWEEN THE OBSTETRICAL
SIDE AND FOLLOWING UP FOR OTHERS
IN PRIMARY CARE SETTINGS.
WHERE ARE THE PEOPLE WHO ARE
ALSO LEARNING THE EXTENT AND
LENGTH OF TIME THAT NEEDS TO
OCCUR SO PEOPLE CAN IDENTIFY
THESE EVENTS AND NOT ONLY THE
DIVERSITY IN THE WOMEN WE'RE
SEEING OR THE FAMILIES WE'RE
SEEING BUT THE DIVERSITY IN
THOSE WHO MAKE INPUT IN DATA
COLLECTION.
THOSE WHO EXPERIENCED STILLBIRTH
OR INVOLVED IN COMMITTEES OR
GROUPS FOR DATA COLLECTION
TRYING TO MAKE SURE THAT THERE'S
DIVERSITY.
WE'VE LEARNED A LOT FROM
MATERNAL MORTALITY REVIEW
COMMITTEE.
THEY'RE VERY DIVERSE AND INCLUDE
COMMUNITY ENGAGEMENT AND EQUAL
SPACE TO HEAR FROM THE VOICES OF
COMMUNITY AND THOSE WHO MAY HAVE
HAD THE SIMILAR EXPERIENCES.
SO YOUR DATA IS MORE ROBUST
BECAUSE WE'VE BEEN TALKING ABOUT
THIS FOR A MINUTE.
DATA IS LACKING AND MISSING.
PART IS BECAUSE OF
PARTICIPATION.
WHAT ARE THE ISSUES WE NEED TO
IDENTIFY SO THAT WHEN WE DO
THINK ABOUT REGISTRIES, WE DO
THINK ABOUT DATA LINKAGE WE HAVE
DATA TO LINK.
>>COULD STILL BIRTH BE A
REPORTABLE EVENT WHICH MANDATES
DATA GATHERING?
>>THERE ARE CHALLENGES WITH
MANDATED REPORTING AND IN SOME
STATES THERE ARE EVEN CHALLENGES
IN REPORTING MAYBE NOT
NECESSARILY REPORTING BUT
OBTAINING THE DATA FOR USE.
LEGAL RESTRICTIONS.
>>GOT IT.
UNFORTUNATELY THAT MAY NOT BE
THE CASE AND GIVEN THE BREADTH
OF DIVERSITY OF JURISDICTIONS IS
NOT ALWAYS MET EAGERLY.
THE OPPORTUNITY IN TERMS OF HOW
DO WE MAKE THIS NOT A FORCED
EXERCISE BUT AN EXERCISE WHERE
INFORMATION'S READILY AVAILABLE
AND ABLE TO BE COLLECTED AGAIN
AT APPROPRIATE TIMES AND MORE
BROADLY.
AND THAT DOES REQUIRE RESOURCES.
DATA COLLECTION ISN'T SEXY.
AND IT REQUIRES TIME, ENERGY,
SUPPORT, DEDICATION, TRAINING.
FOR FAR TOO LONG WE HAVEN'T
GIVEN IT THE ATTENTION IT
DESERVES.
>>WE DO NEED TO DO IT SEVERAL
YEARS.
>>I WISH DR. JOANNE CACCIATORE
WAS HERE AS WELL.
I HAD SEVERAL QUESTIONS FOR HER.
PERHAPS WE CAN BRING THOSE UP IN
OUR PRIVATE CONVERSATIONS WITH
HER SO THEY BECOME A PART OF THE
REPORT BECAUSE HER PRESENTATION
WAS WAS POWERFUL AND KEEPING THE
THEME THIS IS SUCH A TRAUMATIC
EVENT AND THE THEME OF
PSYCHOLOGICAL IMPACT AND
IMPLICATIONS FOR TREATMENT OF
MOTHERS WHO GO THROUGH
STILLBIRTH.
JOANNE REFLECTED HER PERSONAL
EXPERIENCE AS WELL AS THAT OF AN
EXPERT IN THE AREA.
WE'RE BEFORE TO BREAK BUT I SEE
GOOD GOLD'S HANDS RAISED AND SEE
IF THERE'S SOMETHING MORE BEFORE
WE BREAK.
>>AS A RESEARCHER I'M LOOKING
FOR REPRODUCTIVE OUTCOMES AND
MENTAL HEALTH DATA AND IT'S HARD
TO FIND.
I CAN FIND IF A PERSON'S
PREGNANT BUT NOT THE OUTCOME OR
HOW MANY KIDS SHE'S HAD BUT NOT
IF SHE'S HAD A STILLBIRTH OR
INFANT DEATH AND GOING FORWARD
AND FOR EVACUATED -- CDC
THINKING OF PREGNANCY OUTCOMES
AND VARIABLES IN THE DATA SETS
EVEN IF IT'S ONLY A COUPLE
QUESTIONS WOULD BE HELPFUL IN
MOVING OUR ABILITY TO LOOK AT
BIG POPULATION-BASED DATA SETS.
>>WE HAVE TALKED BIG
DR. BARFIELD'S DIVISION IN
TRYING TO ESTABLISH THE LINK.
AND WE WERE LOOKING AT THIS
BEFORE COVID HAPPENED AND
SOMETHING I'M EAGER TO GET BACK
TO IS ESTABLISH THE CONNECTION
BETWEEN THOSE TWO ENTITIES THAT
SO CLOSELY BELONG TOGETHER.
THANK YOU.
>>GO AHEAD.
>>AND TO PIGGYBACK, I THINK YOU
GUYS ARE ON TRACK WITH THE
IMPORTANCE OF DATA.
I KNOW FROM THE PRAMS SIDE ONE
OF THE OPPORTUNITIES FOR MAKING
DATA A LITTLE BIT MORE AVAILABLE
IS OUR EFFORTS TO HAVE AN
AUTOMATED RESEARCH FILE WHERE
RESEARCHERS CAN BASICALLY
DOWNLOAD THE DATA SETS.
WE'LL HAVE SOME OF THE PRAMS
MENTAL CONDITIONS FOR THOSE THAT
HAVE DELIVERED A LIVE BIRTH.
AT THIS POINT THERE'S NOT A PLAN
FOR ADDING FETAL DEATHS TO THAT
BUT THAT'S BECAUSE I THINK THAT
WAS A STATE-BASED DECISION.
ADDITIONALLY, WE ALSO HAVE
QUESTIONS ON PRAMS AND SOARS
THAT CAN BE COMBINED AND LOOKED
AT FOR ASSESSING ANY OF THE
OUTCOMES.
>>IT'S A GREAT DISCUSSION FOR
ANSWERING THE CHARGE WE
REQUESTED.
IF THAT'S OKAY WE'LL ADD AROUND
15, 17 MINUTES BREAK AND COME
BACK AT 2:00.
YOU CAN LEAVE YOUR WEB ON AND
COME BACK AND WE'LL START WITH
OUR SECOND PART WITH THE KNOWN
RISK FACTOR FOR STILLBIRTH.
I WANT TO THANK THE SPEAKERS FOR
THE GREAT FIRST PANEL.
>>HI, EVERYONE.
I HOPE YOU HAD A CHANCE FOR A
BREAK.
I KNOW IT WAS AN INSIGHTFUL WE
HAD AND WORKING ON PANEL 2 THE
KNOWN RISK FACTOR FOR
STILLBIRTH.
WE'RE OPEN FOR DISCUSSION AND
WE'LL WORK WITH THAT DISCUSSION.
OUR FIRST SPEAKER IS DR. SILVER
THE CHAIR OF THE DEPARTMENT OF
OBSTETRICS DEPARTMENT OF THE
UNIVERSITY OF UTAH.
THANK YOU, DR. SILVER.
>>THANK YOU FOR INVITING ME AND
THE TOPIC IS BROAD AND THE TIME
IS A LITTLE BIT CUT DOWN BECAUSE
I'LL TALK ABOUT INFECTION LATER
ON.
I CAN JUST GIVE AN OVERVIEW AND
WILL TRY TO FOCUS ON THEMES THAT
RECU CUCUR AND GO INTO RISK FAC
THAT ARE OF INTEREST AND
CONTROVERSY SO IF I MISS YOUR
FAVORITE RISK FACTOR, APOLOGIZE
AND ASK ABOUT IT DURING THE
QUESTIONS.
ONE WAY TO THINK ABOUT RISK
FACTORS IS WE HAVE CAUSES AND
STILLBIRTHS BUT YOU CAN'T
DISTINGUISH BETWEEN THEM WITH
100% CERTAINTY.
AND THERE'S A LOT OF OVERLAP.
AND RISK FACTORS CAN BE DEFINED
AS MATERNAL I'M MISSING THE
BOTTOM OF THE SCREEN IN MY VIEW.
THEY CAN BE DEFINED AS MATERNAL
CHARACTERISTICS WITHOUT AN
UNKNOWN CAUSAL PATHWAY LEADING
TO DEATH AND THAT'S TRUE IN SOME
CASES BUT NOT ALL CASES THEY
ALSO IN OBESITY AND MATERNAL AGE
AND THAT'S FOR OTHER CAUSES AS
WELL AND DOWN SYNDROME IS A
CAUSE OF LIVE BIRTH.
THERE'S A LOT OF OVERLAP.
IN THE SERN STUDY YOU CAN GROUP
THE CAUSES OF DEATH INTO BROADER
GROUPS AND TO GIVE A FRAMEWORK,
A THIRD ARE PLACENTAL CAUSES AND
10% OR 15% ARE FETAL PROBLEMS
INTRINSICALLY OR MALFORMATIONS,
INFECTION AND MEDICAL
COMPLICATIONS LIKE DIABETES OR
THE UMBILICAL OR HYPERTENSIVE
DISORDERS.
YOU CAN ALSO LOOK AT THOSE
MATERNAL AND FETAL OR
ENVIRONMENTAL.
ANOTHER WAY TO THINK ABOUT IT IS
THOSE READILY OBTAINED AND THEY
CAN BE USED FOR PREDICTION AND
ROUTINELY ASSESSED AND OTHER
RISK FACTORS YOU'D HAVE TO DO
ADDITIONAL TESTING AND OBTAIN
ADDITIONAL INFORMATION NOT
ROUTINELY ASSESSED.
A DIFFERENT WAY TO THINK ABOUT
IT I FIND USEFUL IS WHAT'S THE
PURPOSE OF ASSESSING RISK
FACTORS, WHY SHOULD WE TALK
ABOUT THIS IN THE FIRST PLACE?
THE REASON THE EPIDEMIOLOGIC
REASONS ARE IMPORTANT AND YOU
HAVE TOBACCO AND SMOKE CESSATION
AND TO USE IT FOR PREDICTION OF
STILLBIRTH.
THAT CAN LEAD TO RISK
STRATIFICATION AND MANAGEMENT
INTERVENTIONS WITH HOPES OF
DECREASING THE RISK OF
STILLBIRTH FROM MEDICATIONS,
TESTING AND DELIVERY AND I THINK
RISK FACTORS CAN PROVIDE CLEARS
TO THE PATHOPHYSIOLOGY OF
STILLBIRTH.
IF WE ASK WHY IS THIS A RISK
FACTOR MAYBE WE'LL FIND A
PATHWAY TO STILLBIRTH AND CAN
IDENTIFY NOVEL THERAPEUTIC THAT
ARE GETS.
-- TARGETS.
THE NEXT FEW SLIDES ARE A
COALITION OF STILLBIRTH RISK
FACTORS.
I'LL SPARE GOING OVER IT IN
DETAIL BECAUSE IT WOULD BE LIKE
READING THE DICTIONARY BUT
ANOTHER FRAMEWORK FOR THINKING
ABOUT THESE.
IF WE LOOK AT RISK FACTORS IT'S
IMPORTANT TO THINK HOW COMMON IS
THE CONDITION AND HOW PROFOUND
IS THE RISK FACTOR.
IF YOU HAVE IT HOW MORE LIKELY
ARE YOU TO HAVE STILLBIRTH THAN
WITHOUT A RISK FACTOR AND WE
HAVE SMOKING AND OBESITY WHICH
ARE QUITE COMMON THOUGH THEY
ONLY INFECTIOUS THE RISK OF
STILLBIRTH A LITTLE BIT.
I WON'T TALK ABOUT OBESITY
BECAUSE THAT WILL BE THE SUBJECT
OF THE NEXT TALK IN DETAIL.
LOW EDUCATION.
I WANT TO PAY ATTENTION TO THE
PRIOR FETAL GROWTH RESTRICTION.
THE REASON IS NOT THAT THAT'S A
PROFOUND FACTOR BUT WHEN WE
STUDY STILLBIRTH WE STUDY ALL
ADVERSE PREGNANCY OUTCOMES AND
THE HISTORY OF ANY ADVERSE
OUTCOME LEADS TO A RISK OF
STILLBIRTH AND OTHER ADVERSE
PREGNANCY OUTCOMES AND YOU'RE AN
INCREASED RISK OF SUBSEQUENT
PREGNANCY OUTCOMES.
WE'RE STUDYING ALL OBSTETRIC
COMPLICATIONS.
WE HAVE GESTATION AND RACE AND
THINGS LIKE MEDICAL CONDITIONS
AND CHRONIC HYPERTENSION AND
DIABETES AND HYPERTENSIVE
CONDITIONS AND GESTATIONAL
DIABETES.
YOU'VE HEARD TALKS ABOUT
DISPARITIES AND RATES IN
NON-HISPANIC BLACK WOMEN ARE
TWICE AS HIGH AS OTHERS.
I THINK ILLINOIS STRAIGHTS HOW
TO USE THIS TO GET AT
PATHOPHYSIOLOGY.
AND IF YOU'RE BLACK HIGHER
PROPORTION OF STILLBIRTHS WERE
DUE TO COMPLICATIONS OR
INFECTION DUE TO OTHER RACE OR
ETHNICITY.
THAT'S HOW WE CAN USE THE RISK
FACTORS TO DRILL DOWN AND IN
TERMS OF HOW TO BE BETTER ABOUT
STILLBIRTHS.
THIS SHOWS AGES ASSOCIATED AND
35 TO 39 IS 1.3 AND OVER 4 IS
1.7.
THERE ARE THINGS IF YOU'RE OLDER
OR MORE LIKELY TO HAVE
COMORBIDITIES BUT IF YOU ADJUST
FOR THOSE THINGS THE
RELATIONSHIP HOLDS.
THERE WAS A RANDOMIZED TRIAL
DONE RELATIVELY RECENTLY.
THEY TOOK PATIENTS OVER 35 YEARS
OF AGE AND INDUCED THEM AT 39
WEEKS OR EXPECT ANALLY MANAGED
THEM.
THERE WAS BASICALLY NO
DIFFERENCE IN THE GROUPS.
IT WAS A RELATIVELY SMALL NUMBER
OF PATIENTS.
THE REASON I WANTED TO SHOW THAT
SLIDE IS WE HAVE RISK FACTORS
AND THEN MEDICAL INTERVENTIONS
THAT ALTER RISK IT CAN CHANGE
OVER TIME AND WAS INTERESTING IN
THE TALK MOST RECENT STUDIES
DIDN'T SHOW IT TO BE A RISK
FACTOR.
I THINK IT'S BECAUSE WE WIDELY
ADOPTED THE PRACTICE OF DOING
NON-STRESS TEST AND INDUCING
FOLKS AT 39 WEEKS EVEN WITHOUT
EVIDENCE.
THERE ARE MORE RECENT STUDIES IN
STUDIES THAT SHOWED NO
INTERVENTION AND THIS CAN ALTER
RISK AND THIS IS A GOOD
ILLUSTRATION.
AND IMPORTANT TO NOTE THEY CAN
INTERACT AND WITH EXPOSURES AND
GENETIC VARIATION WE ALSO HAVE
TO STUDY THEM IN RELATIONSHIP TO
EACH OTHER.
TOBACCO IS THE LARGEST
PREVENTIBLE CAUSE OF STILLBIRTH
THE ODDS RATIO IS 1.5 PER
STILLBIRTH AND NOTEWORTHY THE
RISK IS MITIGATED IF YOU STOP
SMOKING IN THE FIRST TRIMESTER.
THERE'S GOOD PLAUSIBILITY AND
THERE'S INCREASED HEMOGLOBIN AND
SLIGHT INCREASE IN ABRUPTION AND
THE SCRN ASSESSED THIS AND WE
ALSO ASSESSED ILLICIT DRUG USE
IN UMBILICAL CORD SECTIONS.
IF YOU WERE NEGATIVE SO THERE
WAS NO SMOKING THAT WAS THE
REFERENCE.
LOOKING AT THE ODDS RATIO THE
HIGHER THE LEVEL THE HIGHER THE
RISK OF STILLBIRTH.
NOT PERFECT BUT A STRONG TREND
WHERE THE LOWEST LEVEL IS
TWOFOLD INCREASE.
THIS SHOWS TOXICOLOGY AND IF YOU
HAD POSITIVE THC THERE WAS A 2.8
FOLD INCREASED RISK OF
STILLBIRTH GIVEN HOW
INCREASINGLY COMMON THC USE IS.
THERE WAS A PROFOUND ASSOCIATION
WITH OXYCODONE AND WE TRIED TO
NOT INCLUDE PRESCRIPTION DRUGS
AND THERE WAS A STRONG
RELATIONSHIP BETWEEN SMOKING AND
DRUG USE WHICH IS HARD TO
UNTANGLE.
IT'S ALSO HARD TO FIGURE OUT
ALCOHOL BECAUSE THERE'S NO GOOD
BIOMARKER AND PEOPLE ARE
RELUCTANT TO BE HONEST ABOUT
ALCOHOL USE BECAUSE OF STIGMA.
THERE'S BEEN A RELATIVE RISK OF
ABOUT 3.
THERE WAS A PAST STUDY FUNDED BY
NICHD AND A WANT TO HIGHLIGHT
THE WORK DONE BY NICHD THAT
ISN'T DIRECTLY RELATED TO
STILLBIRTH BUT STILL RELATED TO
STILLBIRTH RESEARCH.
THIS WAS CONDUCTED WHERE THERE'S
LESS STIGMA ABOUT DRINK AND HIGH
ALCOHOLISM RATES AND 22% OF THE
COHORT ADMITTED TO ALCOHOL USE
AND STROKING AND 90% ALCOHOL
ONLY.
THERE WAS AN INCREASED RISK OF
STILLBIRTH THAT PEOPLE DID BOTH
AND A SIGNIFICANT THREE-FOLD
INCREASE IN THE RISK OF LATE
STILLBIRTH.
MATERNAL DISEASES WE CAN'T GO
THROUGH ALL BUT 10% OF
STILLBIRTHS ARE ASSOCIATED WITH
DIABETES AND HYPERTENSION AND
LATE FETAL TOGETHER ARE
ASSOCIATED WITH THESE CONDITIONS
THAT ARE POTENTIALLY
PREVENTIBLE.
AND A COUPLE EXAMPLES THIS IS A
SLIDE OF MATERNAL HYPERTENSION
IN YELLOW AND WHAT GESTATIONAL
AGES THEY OCCUR IN.
THAT ALLOWS US TO TARGET
INTERVENTIONS AT THOSE
GESTATIONAL AGES.
HERE'S A SIMILAR SLIDE AND WHEN
YOU HIT 38 WEEKS AND DRAMATIC
AFTER 40 WEEKS AND DATA LIKE
THIS LED TO RECOMMENDATION TO
INDUCE PEOPLE WITH DIABETES AT
39 WEEKS AND HAS INFLUENCED THE
RATE OF STILLBIRTHS WITH
PATIENTS WITH DIABETES AND IN
SOME STUDIES THERE WAS NO
INCREASE RATE.
YOU HAVE GESTATIONAL SERUM BIO
ASSAYS AND AFFECTS 2% OF
PREGNANCIES.
THERE'S DIFFERENCES IN DIFFERENT
POPULATIONS.
AND THERE'S AN INCREASE RISK.
WE USED TO THINK IT WAS USED TO
BILE ACIDS IN THE PLACENTA BUT
IT HASN'T REALLY PANNED OUT AND
IT'S LED TO OBSTETRIC
INTERVENTIONS.
AND TO GIVE PERSPECTIVE A
THRESHOLD OF OVER GOES TO A
CONDITION AND WE'VE DONE A LOT
OF OBSTETRIC INTERVENTIONS WHICH
INCLUDE AGGRESSIVE PRETERM BIRTH
AND THAT HAS REDUCED THE RISK OF
STILL BIRTH BECAUSE MOST COHORT
STUDIES SEE IT EXCEEDINGLY RARE
BUT IT'S IN THE CLEAR WHETHER
WE'RE CAUSING MORE HARM THAN
GOOD AND THE CASE CONTROL STUDY
WE MEASURED BILE ACIDS AND FOUND
NO ASSOCIATION WITH BILE ACIDS
AND STILLBIRTH.
AND I WANT TO SPEAK TO
SUBSEQUENT COMPLICATIONS ON
STILLBIRTH.
THE AND THE OVER ALL STILLBIRTH
RATE IS 0-8% AND INCREASED
TENFOLD BUT HIGHER RISK WITH AN
EARLIER LOSS OR NON-HISPANIC
BLACK AND THE INCREASED LOSS FOR
UNEXPLAINED STILLBIRTH.
PREVIOUS HISTORY CAN INFORM US
IN TERMS OF COUNSELLING
PATIENTS.
AND THERE WAS A LOT OF PUBLICITY
A DECADE AGO AND TESTING DONE
AND IN CASE CONTROL STUDIES
THERE WAS A FOURFOLD INCREASE
RISK OF STILLBIRTH AND AN
ASSOCIATION WITH PREECLAMPSIA
AND IT WAS HYPOTHESIZED AND
THROMBOPHILIA PRE DISPOSES YOU
TO BLOOD CLOTS AND WOULD LEAD TO
ABRUPTION AND DAMAGE TO THE
PLACENTA.
THERE WAS A COHORT STUDY WITH
THE MOST COMMON THROMBOPHILIA
WAS NOT ASSOCIATED WITH THIS AND
IT WAS NOTABLE IN THE COHORT
STUDY THERE WAS NO ASSOCIATION
BETWEEN THIS AND PREGNANCY LOSS
AND JUST AS COMMON IN CONTROLS
AS CARRIERS AND SIMILAR DATA.
THERE'S CONFLICTING RESULTS
BETWEEN THE RETROSPECTIVE AND
PROSPECTIVE STUDY AND MOST HAVE
A NORMAL PREGNANCY OUTCOME.
HOW DO YOU MAKE SENSE OF THIS?
MAYBE THROMBOPHILIA ALONE IS NOT
A RISK FACTOR FOR STILLBIRTH.
THE ONE THROMBOPHILIA WHICH IS
AN ACQUIRED CONDITION BUT NOT
GENETIC CONDITION THAT IS
ASSOCIATED WITH STILLBIRTHS IS
THE SYNDROME THAT YOU HAVE TO
MEET CERTAIN CRITERIA FOR BUT
EVEN IN THE ABSENCE IF YOU
MEASURE ANOPHOSPHOLIPID
ANTIBODIES WE WERE ABLE TO SHOW
THIS IN THE STUDY AND SOME
ANTIBODIES BECAUSE THERE'S MANY
THAT ARE MORE ASSOCIATED WITH
STILLBIRTHS WITH THE ODDS RATIO
OF 4.
AND TO SUMMARIZE THEY'RE PRESENT
IN 11% OF STILLBIRTHSES AND THE
ISO TYPES ARE HIGHER RISK
FACTORS THAN OTHERS.
IT'S A MEANINGFUL RISK FACTOR.
FETAL GROWTH RESTRICTION A RISK
FACTOR AND SOMETHING WE HAVE AN
OPPORTUNITY TO DO BETTER WITH
SUBSEQUENT RESEARCH.
REPORTEDLY A SIXFOLD RISK
FACTOR.
MANY OF THE STUDIES ASSUME THE
WEIGHT AT BIRTH IS BASED ON A
GESTATIONAL AGE ASSUMING THE
BABY DIED THE DAY BEFORE.
MANY TIMES THERE'S A THEY ARE
BETWEEN THE TIME OF DEATH AND
THE TIME OF DELIVERY.
EVEN WITH THAT, IT'S STILL A
CONSIDERABLE RISK FACTOR AND NON
SPECIFIC BECAUSE WE OFTEN DEFINE
THIS AS THE BOTTOM 10% OF A
NORMAL POPULATION AND IDENTIFY
CONSTITUTIONALLY SMALL FETUSES
AND WE CAN ADDRESS BABE YES THAT
ARE AT RISK FOR STILLBIRTHS.
PEOPLE HAVE SUGGESTED USING
CUSTOMIZED GROWTH CURVE AND NOT
HAVE PANNED OUT AS GOOD AS HOPE
AND SOME PUBLISHED WHERE THEY
DID ROUTINE THIRD TRI MEST
ULTRASOUND AND THEY WERE ABLE TO
HAVE A THREEFOLD INCREASE IN THE
IDENTIFICATION OF GESTATIONALLY
AGED FETUS OR GROWTH RESTRICTION
HOWEVER, THE BABIES DIDN'T DO
ANY BETTER.
IT'S NOT CLEAR IT'S VALUABLE.
I WANT IT TALK ABOUT FETAL
MOVEMENT COUNTING AND THOSE OF
US DOING THIS A WHILE THERE'S
MANY STORIES OF PATIENTS HAVING
DECREASED FETAL MOVEMENT AND
COMING IN WITH A STILLBIRTH OR
DID A CAESAREAN AND THOUGHT WE
SAVED THE BABY'S LIFE.
AFTER META-ANALYSIS OF RCTs AND
THEY HAD A STANDARDIZED PROTOCOL
WHERE THEY HAD PEOPLE PAY
ATTENTION AND IT LED TO FETAL
MONITORING AND THERE WAS A
SLIGHT DIFFERENCE IN PERINATAL
DEATH BETWEEN THE STUDY GROUP
THAT COUNTED FETAL MOVEMENTS AND
THE CONTROL GROUP.
THE DIFFERENCE IS .54 VERSUS
.59% AND THERE WAS NO
IMPROVEMENT IN SECONDARY
OUTCOMES AND THERE WAS AN
INCREASE IN CAESAREAN AND
PRETERM DEATH IN THE KICK COUNT
GROUP.
THE STUDY TRIED TO SHOW A
BENEFIT TO ASSESSING FETAL
MOVEMENT WAS A TRIAL DONE IN THE
U.S.
A STEP WEDGE CLUSTER RANDOMIZED
TRIAL THEY HAD A CURE PACKAGE
FOR REDUCED FETAL MOVEMENT AND
HAD A CONTROL PERIOD AND WASHOUT
PERIOD AND A STANDARDIZED
MANAGEMENT AND THE RISK WAS 0.9.
A TREND TOWARDS STILLBIRTH
REDUCTION BUT IT WAS A NEGATIVE
STUDY BUT MAY HAVE BEEN UNDER
POWERED FOR A RARE OUTCOME.
YOU HEARD PREVIOUS DISCUSSION
AND IT COULD BE WE'RE SIMPLY
UNDER POWERED AND IT'S A RARE
OUTCOME AND WE NEED LARGER
SAMPLE SIZES TO SHOW IMPACT.
WE ALSO MAY NEED BETTER RISK
STRATIFICATION.
AND DECREASED MOVEMENT WITHOUT
THE OTHER FACTORS AND THEM THOSE
PATIENTS ARE OKAY.
SOME ARE STUDYING THE RATIO AS A
WAY TO STRATIFY THESE FOLKS.
MAYBE WE THESE BETTER
INTERVENTIONS OR IT MAY TURN OUT
THE FETAL MOVEMENT IS JUST TOO
NON SPECIFIC BECAUSE IT'S SO
COMMON.
IT MAY NOT BE AS USEFUL AS HOPED
BUT NEEDS MORE WORK.
ANOTHER AREA IS SLEEP POSITION
ASSOCIATED WITH STILLBIRTH.
IN CASE CONTROL STUDIES THE ODDS
RATIO IS 2.5 TO 8.
META-ANALYSIS SHOWED 2.6.
IF YOU LIE SUPINE WHEN PREGNANT
SOME PATIENTS WILL COMPRESS THE
IBC AND HAVE REDUCED BLOOD FLOW.
IF YOU HAVE LEFT LATERAL TILT
THAT WILL OBVIATE THAT AND
PATIENTS CAN BE KNAUSS -- NA
EXPERIENCE NAUSEA OR DIZZY AND
WE TRY TO MITIGATE THE RECALL
BIAS BY ASKING CONTROLS ABOUT
GOING TO SLEEP WHILE PREGNANT
BUT THERE'S STILL RECALL BIAS
WHEN YOU ASK FOLKS ABOUT
STILLBIRTH BUT IT'S LED TO
PUBLIC HEALTH CAMPAIGNS SO IT'S
ANOTHER AREA WE NEED TO WRAP OUR
HANDS AROUND.
SLEEP BREATHING STUDY WAS PART
OF THE NEW MOM-TO-BE STUDY.
WE WANT TO GIVE FOLKS CREDIT.
ITS WAS AN OBSERVATIONAL COHORT
STUDY AND PEOPLE HAD VISITS 6
WEEKS TO 14 WEEKS AND THE THIRD
22 TO 30 AND MOST WERE 28 TO 30
WEEKS.
THEY HAD A LOT OF STUFF DONE AND
ALSO 10,000 PATIENTS ANSWERED
QUESTIONS ABOUT SLEEP AND A
THIRD HAD AN OBJECTIVE
ASSESSMENT OF SLEEP AT HOME.
AND THE FOCUS WAS SLEEP DISORDER
BREATHING BUT WE WERE ABLE TO
ASCERTAIN INFORMATION ABOUT
SLEEP POSITION.
USING A COMPOSITE ADVERSE
PREGNANCY OUTCOME THERE WAS NO
ASSOCIATION FOR SELF-REPORTED
SUPINE SLEEP IN A COMPOSITE
PREGNANCY OUTCOMES AT THE
FURTHER STUDY VISIT.
AT THE THIRD STUDY VISIT THE
ODDS RATIO WAS 0.27 AND
PROTECTIVE EFFECT OF SUPINE
SLEEP.
NO ONE THINKS IT'S PROTECTIVE
BUT CALLS INTO QUESTION WHETHER
SLEEP POSITION IS A CRITICAL
ISSUE.
THERE WAS ALSO NO ASSOCIATION
BETWEEN OBJECTIVE SUPINE SLEEP
OR IPOs.
THE ADVANTAGE OF THE STUDY IS IS
THE PROSPECTIVE STUDY IS
SUBJECTIVE TO OBJECTIVE DATA AND
UP TO 30 WEEKS GESTATION.
AND AT THE THEN OF PREGNANCY THE
UTERUS IS LARGER SO MAYBE WE
HAVEN'T ADDRESSED SUPINE SLEEP.
I WANT TO GO INTO RISK FACTORS
AND THE BEST TIME FOR DELIVERY.
IT'S A TERRIFIC AREA FOR
RESEARCH AND WAY TO UTILIZE RISK
FACTORS.
DELIVERY IS ONE OF THE KEY WAYS
TO PREVENT STILLBIRTH BUT ALSO
HAS A SIGNIFICANT DOWN SIDE.
WE HAVE TO REALLY BE EVIDENCE
BASED AND CAREFUL.
WE WANT TO GO TO THE LARGEST
BENEFIT OF INDUCED LABOR AND IF
YOU HAVE A 1 IN 5,000 RISK
YOU'LL CAUSE MORE HARM THAN WITH
NOT DELIVERING WE NEED TO FIGURE
THIS OUT.
THIS HOW WE NEED TO VIEW RISK
FACTORS.
IT TURNS OUT MANY RISK FACTORS
ARE ASSOCIATED WITH STILLBIRTH.
RISK FACTORS EXPLAIN VERY LITTLE
OF THESE AND IF WE'RE GOING TO
PREDICT STILLBIRTH WE HAVE TO
TARGET THE ENTIRE POPULATION AND
NEED BETTER METHODS TO IDENTIFY
HIGH RISK PATIENTS AND DO RISK
STRATIFICATION.
THERE'S MANY MODELS USING A.I.
OR MACHINE LEARNING BUT STILL
HAVE OVER ALL POOR PREDICTIONS
BUT SO MANY CASES HAPPEN WITH NO
RISK FACTORS SO WE NEED BETTER
RISK STRATIFICATION AND MAY BE
ABLE TO DO SO WITH BIOMARKERS.
AND I'M SUGGESTING AREAS OF
RESEARCH THUS FAR BIOMARKERS,
NONE ARE REALLY CLINICALLY
USEFUL BUT THERE'S THE POTENTIAL
FOR MARKERS THAT ARE ASSOCIATED
WITH FETAL HYPOXIA AND OXIDATIVE
STRESS TO BE USED.
SAME IS TRUE FOR ULTRASOUND AND
WE MEASURED THE PLACENTA AND
FLOW THROUGH MATERNAL OR FETAL
VESSELS AND HASN'T DONE VERY
WELL BUT THERE'S POTENTIAL TO BE
BETTER.
THE ARRIVE TRIAL HAS SHOWN
DELIVERY AT 39 WEEKS IS A SAFE
AND REASONABLE OPTION.
AND WOULD REDUCE SOME
STILLBIRTHS.
THERE'S MANY ACCEPTED
INDICATIONS FOR LATE TERM BIRTH
AND THOSE ARE ALL THE RISK
FACTORS WE'RE TALKING ABOUT.
MANY ARE BASED ON WEAK EVIDENCE
AND WE TEND TO USE A ONE-SIZE
FITS ALL FOR A BINARY OUTCOME
LIKE PREECLAMPSIA FEATURES
THERE'S A TREMENDOUS OPPORTUNITY
BASED ON RISK FACTORS.
I WANT TO ACKNOWLEDGE THE SERN
AND NICHD FOR ALL THE GREAT WORK
AND IT'S GREAT IT SEE MANY
PEOPLE ON THIS PANEL AND IF WE
WERE ALL A LITTLE BIT YOUNGER
AND HAD A LITTLE BIT MORE HAIR
THEN.
FINALLY LET'S NOT FORGET THERE'S
A STORY BEHIND EVERY STILLBIRTH.
I KNOW WE'RE GETTING MORE IN THE
SCIENCE BUT WE DON'T WANT TO
LOSE SIGHT OF WHY WE'RE DOING
THIS.
THANK YOU VERY MUCH.
>>THANK YOU.
THANK YOU FOR THE NEXT STEPS.
I APPRECIATE IT.
WE HAVE TO MOVE TO THE NEXT
PRESENTATION BECAUSE OF THE
TIME.
AND WE'LL OPEN THE DISCUSSION.
WE HAVE DR. SIMON PROFESSOR OF
DEPARTMENT OF OBSTETRICS AND
GYNECOLOGY AND REPRODUCTIVE
SCIENCE AND EXECUTIVE VICE CHAIR
AT THE UNIVERSITY OF PITTSBURGH
AND GOING TO TALK ABOUT
STILLBIRTHS.
THANK YOU SO MUCH.
>>THANK YOU FOR THE OPPORTUNITY
TO PARTICIPATE IN THE TOPIC.
AND MORE SO PLEASED ABOUT THE
OPPORTUNITY TO HEAR ALL THE
DISCUSSION.
SO FAR IT'S WIDE RANGING IN
SCOPE AND INCREDIBLY IMPORTANT.
I'M GLAD TO HAVE THE OPPORTUNITY
TO TALK ABOUT ONE OF THE RISK
FACTORS THAT BOB DISCUSSED
OBESITY AND STILLBIRTH.
IT'S IMPORTANT FOR A RANGE OF
REASONS.
I THINK WE KNOW THIS WITH
RESPECT TO SO MANY CONDITIONS
THAT PROVIDE HEALTH CARE BURDEN
WORLDWIDE AND THE U.S.
OBESITY CONTRIBUTES TO SO MANY
AND INCREASING IN FREQUENCY THIG
FIGURE IS FROM THE NIDDK AND
DESCRIBES THE FREQUENCY OF
OBESITY IS OVER ALL SEVERE IN
THE ADULT POPULATIONS IN THE
UNITED STATES FROM 2000 THROUGH
2018 WITH WHAT SEEMS LIKE AN
INCREASE IN FREQUENCY IN OBESITY
OVER ALL AND SEVERE OBESITY.
THAT BURDEN IN TERMS OF
FREQUENCY IS NOT UNIFORM IN OUR
POPULATION THIS FIGURE IS SEVERE
OBESITY.
YOU'LL SEE WOMEN HAVE A HIGHER
FREQUENCY OF SEVERE OBESITY AND
MUCH LIKE DATA WITH SO MANY
COMMON COMPLEX CONDITIONS AND
THE UNDERLYING EXPOSURES
RELATIVE WE SEE A DISPARITY IN
RACE AS WELL.
OUR POPULATIONS THE LEVERS OF
OUR POPULATION AT GREATEST RISK
FOR STILLBIRTH ALSO CARRY
GREATEST BURDEN OF OBESITY
CONTRIBUTOR.
THE THIS IS A RELATIVE WHIRLWIND
AND I'LL TALK ABOUT THE DATA
SHOWING THE DIRECTION AND
MAGNITUDE OF OBESITY AND LOOKING
AT SYSTEMATIC REVIEW AND
META-ANALYSIS AND THE FIGURE
INDICATES THE STUDIES IN ROWS
AND THE NUMBER OF PARTICIPANTS
IN EACH STUDY IN THE TABLE AND
THE BIGGER THE POPULATION THE
MORE INFLUENTIAL IT IS FOR
META-ANALYSIS AND WHAT IS A
RELATIVELY CLEAR WAY TO
UNDERSTAND THE MAGNITUDE OF THE
RELATIONSHIP OF OBESITY TO RISK
PER FIVE BMI UNITS.
WITH EVERY REFERENCE ABOVE 5 BMI
INDICATES INCREASE AND FOR EVERY
5 POINTS OF INCREASED IN BMI,
THE RELATIVE RISK OF STILLBIRTH
INCREASES BY 25%.
SUBSTANTIAL STATISTICALLY
CONSISTENT AND ACROSS STUDIES
WHICH WERE DONE ACROSS TIME AND
ACROSS POPULATIONS AND ACROSS
COUNTRIES.
CONSISTENT RESULT SHOWING THIS
ASSOCIATION AND THE MAGNITUDE
ASSOCIATION.
ANOTHER WAY OF DEPICTING THIS
YOU CAN SEE IT ALONG A CONTINUUM
IS RELATIVE RISK OF STILLBIRTHS
ON THE Y AXIS AND YOU SEE THE
INCREASE OF STILLBIRTH WITH THE
BMI AND OBESITY BECOMES MORE
SEVERE.
I WANT TO TALK ABOUT THE
POPULATION OF POPULATION
ATTRIBUTABLE RISK.
WE TALKED ABOUT A RANGE OF RISK
FACTORS.
MANY OF WHICH MAY COEXIST IN AN
INDIVIDUAL THAT MAY CONTRIBUTE
TO EACH OTHER AND HOW IMPORTANT
A RISK FACTOR IS FOR A CONDITION
IS RELATED TO THE STRENGTH OF
THE ASSOCIATION OF RELATIVE RISK
AND HOW COMMON THE RISK FACTOR
IS IN THE POPULATION.
AND THIS REVIEW GIVES INSIGHT
INTO THAT.
THIS META-ANALYSIS USED
POPULATION DATA FROM FIVE HIGH
INCOME COUNTRIES AROUND THE
WORLD ONE OF WHICH WAS AROUND
THE WORLD AND THE UNITED STATES
AND EXAMINED NOT JUST THE
STRENGTH OF THE ASSOCIATION OF
OBESITY AND VARIETY OF RISK
FACTORS BUT ALSO POPULATION
ATTRIBUTABLE RISK.
POPULATION ATTRIBUTABLE RISK IS
FRAMED A FRACTION OR PERCENT.
IT SAYS IF WE ACCOUNT FOR THE
MAJOR RISK FACTORS AND REMOVE A
GIVEN RISK FACTOR HOW MUCH WOULD
THAT RISK GO DOWN OR HOW MUCH OF
THE AGGREGATE POPULATION RISK OF
IN THIS CASE STILLBIRTH IS
ATTRIBUTABLE TO OBESITY?
THE ANSWER DEPENDING ON THE
COUNTRY IS 8 TO 18%.
AND IN TERMS OF TRANSLATING THAT
TO POPULATION FREQUENCY THERE'S
ABOUT 8,000 STILLBIRTHS A YEAR
AND THIS IS MODELLING RESULT NOT
COUNTING.
THE MODEL WOULD SUGGEST 8,000
STILLBIRTHS A YEAR ARE
ATTRIBUTABLE TO OBESITY.
PRETTY EXPOSURE FOR THAT REASON.
THE DETAILS ARE LISTED HERE AND
THIS IS AVAILABLE FOR REFERENCE
AND I DON'T INTEND YOU TO READ
EVERY ELEMENT BUT THERE'S A
COLUMN UNDER EACH COUNTRY LISTED
THERE IN THE COLUMNS AND WITHIN
EACH IS THE POPULATION
ATTRIBUTABLE RISK AND GIVES THIS
NUMBER FOR EACH RISK FACTOR AND
OBESITY'S AT THE TOP AND BY WAY
OF MAGNITUDE YOU CAN SEE HOW THE
OTHER RISK FACTORS LIKE SMOKING
AND MATERNAL AGE AND MEDICAL
DISEASE CONTRIBUTE.
AS A REFERENCE ITS GIVES A SENSE
OF THE FACTORS TOO.
I WANT TO TALK ABOUT OBESITY IN
THE CONTEXT OF OTHER OBESITY
RELATED PHENOMENON AND
CONDITIONS WE KNOW IT'S AN
IMPORTANT RISK FACTOR FOR
METABOLIC SYNDROME REFERRING TO
DIABETES AND WE KNOW THAT
HYPERTENSION AND OTHER MEDICAL
COMORBIDITIES AND DIABETES ARE
RISK FACTORS FOR STILLBIRTH AND
SO MAYBE OBESITY IS RELATED TO
STILLBIRTH NOT IN AND OF ITSELF
BUT IT CONTRIBUTES TO MEDICAL
CONDITIONS LIKE DIABETES.
THIS STUDY IS ONE OF A FEW
STUDIES TO LOOK AT THE QUESTION.
IS OBESITY RELATED TO STILLBIRTH
BECAUSE IT'S A RISK FACTOR FOR
DIABETES?
YOU SEE A LARGE DATA SET OF
BIRTHS FROM TEXAS AND EXCLUDED
HYPERTENSIVE DISEASES TAKE IT
OUT OF THE EQUATION AND EXCLUDED
GESTATIONAL DIABETES THAT DURING
PREGNANCY AND BY BMI SEVERITY
AND LOOK AT THE STILLBIRTH
SLIDE.
THIS TABLE SHOWS THE RAISE AND
THE TOP HALF ARE IN FOLKS NON
DIABETIC.
AND FOCUS ON THE COLUMN THAT
SAYS OVER ALL.
THAT SHOIZ
SHOWS THE NUMBER OF STILLBIRTHS
AND YOU GO FROM 15.3 FOR UNDER
WEIGHT AND 15 FOR NORMAL WEIGHT
NON-DIABETES AND MARCHES UP AND
THE NUMBER GETS BIG AS YOU GET
MORE MORBIDLY OBESE AND YOU SEE
THE NUMBERS FOR PREGESTATIONAL
DIABETES.
THAT'S A BIG RISK FACTOR FOR
STILLBIRTH AND WE KNEW THAT
BEFORE THE PAPER.
AN IMPORTANT POINT IS FOR THE
TOP HALF OF THE FIGURE AS YOU
CHANGE IN WEIGHT THERE'S AN
INCREASE IN STILLBIRTH RISK EVEN
WITHOUT DIABETES.
THE RISK OF STILLBIRTH
ATTRIBUTABLE DIABETES TO
DIABETES IS NOT ATTRIBUTABLE TO
PRE GESTATIONAL DIABETES.
THIS TAKES THE SAME SETS OF
RATES IN A HAZARD RATIO.
A MAGNITUDE IN RISK.
THIS THOSE THE RISK MARCHES UP
MORE WITH OBESE AND DIABETES.
THEY'RE INTERACTIVE AND AMPLIFY
THE EFFECTS OF EACH OTHER.
OBESITY RELATES TO STILLBIRTHS.
AN AREA OF RESEARCH INTERESTS
AND AN AREA OF CLINICAL INTEREST
AND PUBLIC HEALTH INTEREST HAS
BEEN GESTATIONAL WEIGHT GAIN.
AS DR. SILVER SAID AND LOOK
FORWARD TO A CONVERSATION
WHETHER GESTATIONAL DIABETES IS
PREVENTIBLE AND WHEN I SEE A
PATIENT FOR THE FIRST TIME IN A
NEW VISIT I CAN MODIFY THAT
PATIENT'S OBESITY WITH
COUNSELLING AND SO OUR
COUNSELLING AND CARE MIGHT BE
IMPLEMENTS TO INFLUENCE WEIGHT
GAIN OVER PREGNANCY.
OVER ALL IN THE GENERAL
POPULATION OR AMONG THOSE WHO
HAVE OBESITY.
THIS PAPER INVESTIGATE THE TOPIC
DOES GESTATIONAL WEIGHT GAIN
INCREASE THE RISK OF
STILLBIRTHS.
I CAN SHOW THE RESULTS IN A
SECOND AND THERE ARE CONFLICTING
AND UNCERTAINTY ON THE TOPIC.
I'LL TALK A LITTLE BIT AND THIS
STUDY ILLUMINATES WHY THAT MIGHT
BE.
THESE FIVE FIGURES ALL LAID OUT
THE SAME.
EACH OF THE FIVE TABLES IS
REFERRING TO A SUBSET OF THE
POPULATION AND NORMAL AND OBESE
AND MORBIDLY.
GOING FROM A TO E THE STRATUM
INCREASES AND EACH OF THE FOUR
LINES ON EACH OF THE FIGURES
SHOWS THE RISK OF STILLBIRTH IN
EACH OF THE FOUR STRATUM OF
GESTATIONAL WEIGHT GAIN.
ADEQUATE WEIGHT GAIN AND
INADEQUATE.
THERE'S WEIGHT GAIN BUT NOT
ENOUGH WEIGHT GAIN BY ILM AND
GAINING BEYOND AND THE RED LINE
WEIGHT LOSS OVER PREGNANCY.
THOSE ARE THE FOUR STRATUM KWN
OBESITY CATEGORIES.
THE ORDER OF THE LIVES IS GOING
RED, GREEN, PURPLE AND BLUE IS
DIFFERENT IN THE FIGURES.
I'LL POINT OUT THAT IN THE
NORMAL WEIGHT GROUP OVERWEIGHT
AND OBESE GROUP THE HIGHEST RISK
IS IN THE RED LINE.
FOLKS WHO LOSE WEIGHT DURING
PREGNANCY.
THIS IS NOT TRUE IN COLUMN E AND
NOT STATISTICALLY DIFFERENT FOR
WEIGHT LOSS IN THE MORBIDLY
OBESE POPULATION.
THE MAGNITUDE OF EXCESSIVE
WEIGHT GAIN IS THE BIGGEST RISK
FACTOR BY A FAIR AMOUNT.
IT'S NOT THAT AWAY FOR ANY OF
THE OTHER BMI STRATUM.
IF GESTATIONAL WEIGHT GAIN HAS
AN AND THAT'S BASED ON THE
CONTEXT OF TOPIC, I THINK IT'S
FAIR TO SAY WE CAN'T REALLY
APPRECIATE THE GESTATIONAL
WEIGHT GAIN AS A RISK FACTOR
WITHOUT THINKING ABOUT BMI AND
OBESITY UP FRONT.
SO AS WE INVESTIGATE THE
MECHANISMS UNDERLYING THIS OR
PUBLIC HEALTH RECOMMENDATIONS AN
NUTRITIONAL RECOMMENDATIONS
MOVING FORWARD ALL OF WHICH ARE
KNOWLEDGE AREAS WE SHOULD FOCUS
ON WE HAVE TO TAKE DATA LIKE
THIS INTO ACCOUNT.
I WANT IT TALK ABOUT CLINICAL
RECOMMENDATIONS AN CLINICAL CARE
WE DID IN OTHER TALKS AND FETAL
MOVEMENTS AND IT'S AN
EDUCATIONAL EFFORT WITH PUBLIC
HEALTH AND CLINICAL
RECOMMENDATIONS EVERY DAY IN
OB-GYN OFFICES AND THIS TALKS
ABOUT THE AFFECT OF OBESITY AND
THE DECREASED MOVEMENT OF FETAL
MOVEMENT AMONG PATIENTS.
IT'S A SYSTEMATIC REVIEW IN
META-ANALYSIS AND THE DETAILS
AREN'T THAT IMPORTANT THE TAKE
HOME POINT AMONG WOMEN THAT
PRESENT WITH DECREASED FETAL
MOVEMENT THOSE THAT GO ON TO
SUBSEQUENT STILLBIRTH ARE LIKELY
TO HAVE OBESITY.
THE IMPLICATION OF OBESITY WITH
DECREASED FETAL MOVEMENT WITH
RESPECT TO STILLBIRTHS IS
GREATER AMONG OBESE PATIENTS
AND WHEN A PATIENT PRESENTS WITH
DECREASED FETAL MOVEMENT WE DO
SOME ASSESSMENT OF FETAL
WELL-BEING WITHIN A STRESS TEST
AND IT'S POSSIBLE OBESITY ITSELF
INFLUENCES THE TEST FOR LOGISTIC
PERSPECTIVE AND INTERPRETATION
PERSPECTIVE.
AND THE INVESTIGATORS EXAMINED
THOSE WITH MORBID OBESITY ALONE
AND THOSE WITH MORBID OBESITY
PLUS MEDICAL COMORBIDITY AND
THOSE WITH A MEDICAL COMORBIDITY
AND FOUND A FEW IMPORTANT
POINTS.
OVER THE OBESITY WAS NOT
ASSOCIATED WITH THE NEED FOR
DOWN STREAM INTERVENTION LIKE
INDUCING LABOR OR DELIVERY OR
SOME SUCH INTERVENTION BUT FIND
OBESITY WAS ASSOCIATED WITH A
GREATER DURATION TO ACHIEVE A
NORMAL NON-STRESS TEST.
IN DOING THESE STRESS TESTS IT
CHANGES THE LOGISTICS OF DOING
THE TEST IN TERMS OF TIME IT
TAKES TO GET TO REACTIVE NON
STRESS TEST.
HOW THEY RESPOND MAY BE
DIFFERENT IN THOSE WHO HAVE
OBESITY VERSUS THOSE THAT DONE
AN IMPORTANT AS WE MAKE
RECOMMENDATIONS AND TRY TO GET
DATA TO DRIVE GOOD CLINICAL
DECISION MAKING.
AND FOR EVALUATING THE PHEE TUS
BY ULTRASOUND IN THE SPACE OF
ALL ULTRASOUND AND STILLBIRTH WE
THINK ULTRASOUND IS IMPORTANT
FOR GETTING A SENSE OF GESTA
GESTATIONAL AGE AND FETAL
ANATOMY AND WHETHER THERE'S
EXPECTED TO BE ANOMALIES FOR
BIRTH DEFECTS IN THE FETUS AND
USED FOR ASSURANCE FOR WELL
BEING.
THERE ARE SUBSTANTIAL DATA IN
ALL REGARDS TO SHOW OBESITY
PRESENTS TECHNICAL LIMITATIONS
FOR THE PERFORMANCE OF THE TEST
THE NOTION A SOUND WAVE
GENERATED BY THE DEVICE
PENETRATES TISSUE AND THERE'S
MORE DIAGNOSTIC UNCERTAINTY AND
INCREASE IN FALSE POSITIVES AND
FALSE NEGATIVES ASSOCIATED WITH
ULTRASOUND IN ALL THE DIAGNOSTIC
CATEGORIES THAT TALKED ABOUT IN
PATIENTS WITH OBESITY VERSUS
WITHOUT.
I HAVE A COUPLE PICTURES OF
THESE IMAGES ONLY TO SAY I
BELIEVE THERE'S OPPORTUNITIES IN
RESEARCH AND DEVELOPMENT FOR
TECHNOLO
TECHNOLOGIES AND OPTIMIZING
TECHNOLOGIES THAT HELP MINIMIZE
THE AFFECTS OF POOR TISSUE
PENETRATION ON CAPACITY.
ULTRASOUND WAS NOT MUCH BETTER
THAN READING TEA LEAVES WHEN I
FIRST STARTED AND BETTER THAN
THAT WITH EXCELLENT ADVANCES IN
TECHNOLOGY TO HAVE IMAGE
PROCESSING TO GET BETTER
PICTURES BUT NOT WHERE WE NEED
TO BE IN TERMS OF OPTIMIZING FOR
THE OBESE POPULATION AND THAT IS
INCREASING IN FREQUENCY.
I WANT TO BRIEFLY TALK ABOUT
MECHANISMS BY WHICH OBESE MAY
LEAD TO STILLBIRTH.
AND THIS IS A POINT MADE WITH
AREN'T TO STILLBIRTH OVER ALL.
OF THE OUTCOMES AND ABRUPTION
AND PREECLAMPSIA OR
HYPERSENSITIVE DISORDERS HAVE A
COMMON SET OF RISK FACTORS MAY
SHARE MECHANISMS AND A SIMILAR
SET OF CIRCUMSTANCES MAY
TRANSDUCE IN SOME PREGNANCIES TO
LEAD IT A SPONTANEOUS PRE TERM
BIRTH AND IN OTHERS LEAD TO
STILLBIRTHS.
TAKING A HIGH POPULATION
ATTRIBUTABLE RISK LIKE OBESITY
THAT HAS RISK FOR ALL THESE
ADVERSE OUTCOMES AND AGGREGATING
OR DISAGGREGATING SHARED OR
DISTINCT MECHANISMS IS LIKELY TO
BE QUITE FRUITFUL NOT ONLY IN
PREVENTION OF MORE COMMON
ADVERSE OUTCOMES LIKE PRE TERM
BIRTH OR PREECLAMPSIA BUT RARER
ONES AND FOR THE SAKE OF HEALTH
AND BETTER DIAGNOSTICS AND
COMMONALITIES FROM RISK FACTORS
LIKE OBESITY IS LIKELY TO BEAR
FRUIT.
I THINK THAT'S IMPORTANT TO
CONSIDER AS WE FRAME OUR
RESEARCH AGENDA MOVING FORWARD.
IS THE WORLD IN WHICH AN
INDIVIDUAL LIVES THE SOCIETY
WRIT LARGE AND THE COMMUNITY
WOMAN THAT SOCIETY CARE BE THE
SOCIAL DRIVERS OF HEALTH AND
THOSE INFLUENCE AND TRANSDUCE
BIOLOGICALLY TO TRANSMIT TO
AFFECT THE FETUS AND THERE ARE
DISCREET SET OF PATHWAYS AND
THESE ARE THE TRANSDUCERS OF
EXTERNAL ENVIRONMENT IMMUNE,
METABOLIC, ENDOCRINE AND
OXIDATIVE AND I LOOK FOR
CONTRIBUTIONS FROM THOSE TO
CONTRIBUTE AND THOSE ARE THE
DOMAINS HOW THEY TRANSDUCE AND
THEY TRANSDUCE THROUGH
INTRACELLULAR PROCESSES TO
AFFECT FETUS/PLA SEP --
PLACENTA AND WE LOOK AT OBESITY
AS A DETERMINATE OF HEALTH AND
MAY BE CONTRIBUTES TO BY
UPSTREAM EXPOSURES TALK ABOUT
THE TRANSMISSION PATHWAYS.
THIS CONCEPTUAL FRAMEWORK IS
IMPORTANT TO KEEP IN MIND.
IT'S A LONG TIME COMING TO ADD
TO THE FOCUS IN THIS AREA AND
LOTS OF FOLKS HAVE CLINICAL
RESEARCH AND PUBLIC HEALTH
INTERESTS IN THIS DOMAIN AND IF
WE CAN BRING THIS.
I'LL BE HAPPY TO WAIT OR THE
DISCUSSION.
>>WE'RE GOING TO MOVE ALONG WOE
HAVE PROFESSOR OF PATHOLOGY AT
MASSACHUSETTS GENERAL HOSPITAL
AND ALSO AT PROFESSOR OF
PATHOLOGY AT HARVARD MEDICAL
SCHOOL.
THANK YOU FOR ACCEPTING OUR
INVITA
INVITATION, DR. ROBERTS.
WE STILL DON'T HEAR YOU.
TECHNICAL TEAM, IS DR. ROBERTS
CONNECTED WELL?
SO WE ARE GOING TO DR. MONICA
WOJCIK'S PRESENTATION IN NEWBORN
MEDICINE MEDICAL DIRECTOR OF
MATERNAL FETAL CARE AT BOSTON
CHILDREN'S HOSPITAL.
>>IT'S BEEN WONDERFUL TO LEARN
FROM THOSE WHO ALREADY SPOKEN.
I'LL BE SPEAKING ABOUT GENOMIC
CONTRIBUTIONS TO STILLBIRTH.
I PRACTICE AS A NEONATOLOGIST
AND GENETICISTS AT BOSTON
CHILDREN'S HOSPITAL.
I'LL REVIEW THE CURRENT
UNDERSTANDING AND THE QUESTION
IS WHICH PROPORTION OF PERINATAL
DEATHS PARTICULARLY STILLBIRTHS
INVOLVE AN UNDERLYING GENETIC
CONDITION.
A RELATED QUESTION BUT EVEN IF
WE KNOW THE GENETIC CONDITION
WHAT'S THE RATE OF PERINATAL
LOSS AND THE ANSWER IS MORE
COMPLEX THAN IT APPEARS IT'S
HELPFUL TO HAVE AN UNDERSTANDING
HOW WE IDENTIFY THE GENETIC
DIAGNOSES.
THEY CAN BE FOUND AT THE LEVEL
OF THE CHROMOSOME OR GENE AND
DIFFERENT TESTS WOULD BE USED TO
IDENTIFY THE DIFFERENT TYPES OF
DIAGNOSES WHERE GENETIC TESTING
ARE DESIGN TO FIND CHROMOSOME
LEVEL DIAGNOSES BUT NOT RELATE
TO SINGLE GENES AND THERE'S
OTHER TECHNIQUES WE'D HAVE TO
USE.
THIS IS IMPORTANT AS WE GET TO
THE CURRENT STATE OF THE
LITERATURE.
INFORMATION THE LIMITATIONS AND
ABILITIES OF TESTS USED IMPACTS
THE ABILITY TO INTERPRET THE
RESULTS.
THIS IS AN OVER ALL SUMMARY ON
THE GENOMICS OF STILLBIRTH.
IF THERE'S ONE THING TO TAKE
FROM THIS OVER ALL THERE'S SO
MUCH TO UNDERSTAND AND WE MADE
WONDERFUL PROGRESS IN THE LAST
DECADE BUT THERE'S A LOT TO DO.
OVER ALL, IF YOU LOOK AT STUDIES
THAT INVESTIGATE FETAL LOSS IN
PARTICULAR, THE LIKELIHOOD OF
FINDING A GENETIC DIAGNOSIS OR
THE PROPORTION OF DIAGNOSES
IDENTIFIED VARIES BY SEVERAL
FACTORS.
THE FIRST WOULD BE GESTATIONAL
AGE WHERE EARLIER LOSS IS OFTEN
ATTRIBUTED TO CHROMOSOMAL
CHANGES AND THE DIAGNOSTIC YIELD
TENDS TO BE HIGHER FOR LOSSES OF
EARLIER GESTATIONAL AGES.
THE PRESENCE OF FETAL ANOMALIES
IS A MAJOR INFLUENCER OF THE
LIKELIHOOD OF IDENTIFYING A
GENETIC CONDITION.
FINALLY UNDERSTANDING THE
POPULATION BEING EVALUATED IS
IMPORTANT TOO AND CERTAIN
STUDIES THAT HAVE LOOKED AT
HIGHLY CONSANGUINEOUS
POPULATIONS THE TESTING
PARTICULARLY FOR RECESSSIVE
CONDITIONS WHERE BOTH PARENTS
ARE CARRIERS OF THE SAME VARIANT
WILL BE HIGHER.
I PUT PERCENTAGES AND IT'S A
BROAD YIELD.
IT HAS TO DO WITH THE STUDIES
AVAILABLE AND THE DIVERSITY OF
COHORTS INCLUDED IN THE STUDIES.
ANYWHERE FROM 10% TO 30% INVOLVE
CHROMOSOMAL CONDITIONS AND FROM
10% IN OVER ALL STILLBIRTHS
WITHOUT NO KNOWN FETAL
ABNORMALITIES ATTRIBUTABLE TO
MONOGENIC CONDITIONS AND COULD
GO UP TO 50% WITH A COHORT OF
PERINATAL LOSS WITH A SUSPICION
OF A GENETIC CONDITIONS AND THE
TESTING FOR STILLBIRTH DEPENDS
ON WHO YOU'RE SELECTING TO TEST.
ONE OF THE NICEST STUDIES
CURRENTLY IS FROM THE
STILLBIRTHS COLLABORATIVE
RESEARCH NETWORK AND THERE'S TWO
SEPARATE PAPERS THAT LOOKED AT
DIAGNOSTIC YIELD FOR CHROMOSOMAL
CONDITIONS USING KARYO-TYTYPE A
USING EXOME SEQUENCING AND IT'S
A CLOSE TO A 20% DIAGNOSTIC
YIELD WHICH IS QUITE HIGH.
I WANTED TO FIRST BRIEFLY TOUCH
ON SOME OF THE DIAGNOSES
IDENTIFIED TO THINK OF BROAD
CATEGORIES OF DIAGNOSES.
SOME THINGS WE FIND RELATE TO
MULTIPLE MALFORMATION SYNDROMES
LIKE DOWN SYNDROME AND THERE ARE
SINGLE GENE CONDITIONS THAT SEEM
TO COME UP OVER AND OVER AGAIN
LOOKING AT THE GENOMICS OF FETAL
LOSS AND AUTOSOMAL POLYCYSTIC
DISEASE AND OTHER BROAD
CATEGORIES OF GENETIC CONDITIONS
THAT CAN LEAD TO FETAL LOSS IS
NEUROMUSCULAR DISORDER AND FOR
THOSE THAT DON'T HAVE APPARENT
STRUCTURAL ALNOMALIES CARDIAC
ARRHYTHMIA WHICH WOULD
POTENTIALLY EXPLAIN FETAL LOSS
WITHOUT STRUCTURAL ANOMALIES
IDENTIFIED.
SO THE WAY TO GO ABOUT
IDENTIFYING THESE DIAGNOSES IS
MORE AND MORE OFTEN REFERRED TO
AS THE GENOMIC AUTOPSY.
TO DEFINE THAT MORE, THIS
INVOLVES SEQUENCING ACROSS THE
GENOME WHICH COULD BE EXOME
SEQUENCING WHICH LOOKS AT THE
CODING REGION OR GENOME
SEQUENCING WHICH EXPANDS ACROSS
THE ENTIRE GENOME TO LOOK FOR
DISEASE-CAUSING VARIANTS.
AND IF IT'S PERFORMED POST
MORTEM PEOPLE REFERRED TO THIS
AS THE GENOMIC AUTOPSY.
I HIGHLIGHTED WORK FLOW ARE
SAMPLES ARE USED FOR DNA
TESTING.
WE LIKE AS MUCH AS PHENOTYPE
INFORMATION AS POSSIBLE SO THIS
COULD COME FROM TRADITIONAL
AUTOPSY OR IMAGING FINDINGS OR
PHOTOGRAPHS AND VARIANTS ARE
CORRELATE WITH WHAT WE KNOW
ABOUT THE PHENOTYPE IN ORDER TO
TRY TO IDENTIFY A GENETIC
DIAGNOSIS.
THIS IS WHAT WE DO ON THE
RESEARCH SIDE.
THIS IS SOMEWHAT SIMILAR IN A
CLINICAL WORK FLOW BUT I'M NOT
AWARE THERE'S A LOT OF CLINICAL
WORK FLOW FOR GENOMIC SEQUENCING
OF STILLBIRTH.
THE FIRST STEP IS TO COLLECT AND
STORE A SAMPLE THAT CAN COME
FROM A PREVIOUSLY SAVED SAMPLE
OR BLOOD SAMPLE OR TISSUE
SAMPLE.
MY GROUP AND OTHERS I WORK WITH
WILL THEN ENROLL INTO A RESEARCH
PROTOCOL THROUGH WHICH WE CAN DO
GENOMIC SEQUENCING AND ANALYSIS
AND RETURN RESULTS IDEALLY IF
ANYTHING IS FOUND.
SOME OF THE ADVANTAGES OF THE
APPROACH IS THAT IT'S MINIMALLY
INVASIVE AND YOU ONLY NEED 1 OR
2 MLs OF BLOOD SO LESS THAN A
QUARTER OF TEASPOON CAN BE
OBTAINED THAT ARE MINIMALLY
INVASIVE AND IT'S USEFUL IF WE
CAN CORRELATE THINGS FOUND WITH
A TRADITIONAL AUTOPSY OR POST
MORTEM EXAMINE BUT FOR FAMILIES
WHO AREN'T CONSERVATIVE IT
OFFERS ANOTHER WAY TO LOOK FOR
POTENTIAL UNDERLYING DIAGNOSES
THAT IS MINIMALLY INVASIVE.
WE IT'S BECOMING INCREASINGLY
COST EFFECTIVE TO DO THIS.
A TEST THAT ONCE COSTS TENS OF
THOUSANDS OF DOLLARS ARE STILL
CHEAPER AND COST IS STILL
SIGNIFICANT TO FAMILIES AND WHY
THE TESTING OFTEN OCCURS IN THE
RESEARCH ENVIRONMENTS.
I IMAGINE THE COSTS WILL COME
DOWN.
SOME POTENTIAL BENEFITS OF A
GENETIC DIAGNOSIS IS FOUND IS
UNDERSTAND.
IT'S HELPFUL FOR FAMILIES AND
FOR PROVIDERS IN THINKING ABOUT
THE NEXT PREGNANCY.
MANY CONDITIONS COULD HAVE A
HIGHER REOCCURRENCE RISK OR
OCCUR IN SUBSEQUENT PREGNANCIES.
WE CAN SCREEN OR TEST FUTURE
PREGNANCIES AND IT CAN BE
HELPFUL TO IDENTIFY OTHER FAMILY
MEMBERS AT RISK FOR OTHER
GENETIC CONDITIONS OR FOR
AFFECTED PREGNANCIES.
THE THIRD IS TO UNDERSTAND THE
GENOMICS OF STILLBIRTH TO HELP
DIRECT INITIATIVES AND THINKING
OF WAYS AND OTHER STRATEGIES TO
USE TO TRY TO REDUCE UNEXPLAINED
FETAL DEATH.
IT'S HARD TO DO THIS WITHOUT
UNDERSTANDING WHICH CONDITIONS
ARE CAUSING THESE DEATHS.
I'M GOING TO SPEND TIME TALKING
ABOUT THE LIMITATIONS OF OUR
CURRENT UNDERSTANDING BECAUSE IT
PUTS WHAT I SAID INTO CONTEXT.
THESE ARE THE FOUR BROAD
CATEGORIES OF LIMITATIONS AND GO
INTO EACH ONE BY ONE.
ANY STUDIES LOOKING AT GENOMIC
SEQUENCING FOR STILLBIRTH
INVESTIGATION WILL HAVE SOME
DEGREE OF ASCERTAINMENT BIAS
BECAUSE YOU HAVE TO IDENTIFY A
COHORT YOU'LL SEQUENCE AND
GENERALLY THIS IS HAPPENING IN
THE RESEARCH ENVIRONMENT.
OFTEN PEOPLE ARE NOT BEING
REFERRED FOR SEQUENCING UNLESS
THERE'S CLINICAL SUSPICION OF AN
UNDERLYING CONDITION.
ALREADY YOU'RE DEALING WITH A
SELECTED POPULATION THE AVA
AVAILABILITY LEADS TO BIAS FOR
THE AFFECTED FETUS AND THE
PARENTS FOR A TRIO ANALYSIS.
THESE ALL LEAD TO DIFFERENCES IN
THE COHORTS BEING STUD YESTERDAY
AND MAKES IT HARDER TO
EXTRAPOLATE FINDINGS TO THE
GENERAL POPULATION.
IT'S IMPERATIVE TO DEFINE THE
GENOMIC CONTRIBUTIONS.
THE SECOND MAJOR LIMITATION IS
THE GENETIC TESTING APPROACHES
HAVE EVOLVED OVER TIME.
ALL GENETIC TESTS HAVE SOME
DEGREE OF LIMITATION.
DEPENDING ON WHAT TEST IS USED
ON THE STUDY AT HAND THERE COULD
BE PATHOGENIC VARIATION OR
DIAGNOSES THAT WEREN'T FOUND
BECAUSE OF THE TESTING APPROACH.
10 OR MORE YEARS AGO THEY WERE
USING KARYOTYPE TO DEFINE
CHARACTERISTIC YIELD AND WE'RE
SEEING EXOME SEQUENCING AND NOW
MORE GENOME SEQUENCING TO
CAPTURE THE WHOLE SPECTRUM OF
VARIATION THAT CAN LEAD TO
STILLBIRTH.
IN EVALUATING CURRENT STUDIES
OUT THERE TO TRY TO DEFINE
DIAGNOSTIC YIELD CAREFUL
CONSIDERATION OF THE TYPE OF
TESTS THAT WAS USED IS IMPORTANT
IN ORDER TO EXTRAPOLATE FROM THE
RESULTS.
IF YOU CAN FIND A VARIANT
INTERPRETING THE VARIANT IS THE
NEXT IMPORTANT STEP AND THIS IS
CHALLENGING IN THE PERINATAL
PERIOD WHERE YOU'RE LIMITED TO
POTENTIALLY ULTRASOUND
INFORMATION.
SOMETIMES POSTMOREM EXAMINATION
AND THEREFORE IF YOU FIND
VARIANTS THAT LOOK LIKE THEY
COULD BE DISEASE CAUSING TRYING
TO ATTRIBUTE CAUSALITY CAN BE
DIFFICULT.
PARTICULARLY IN THE ABSENCE OF
STRUCTURAL ANOMALIES IT CAN BE
HARD TO CONCLUSIVELY IDENTIFY A
DIAGNOSIS AN MORE CHALLENGING IF
THE STUDY'S DONE ONLY WITH THE
FETAL SAMPLE BECAUSE HAVING
PARENTAL DATA IS HELPFUL TO
INTERPRET VARIANTS AND LOOKING
AT WHETHER THINGS WERE HEINHERID
OR NOT AND THERE'S A MORE
CONSERVATIVE ESTIMATE OF THE
YIELD WHERE THE YIELD DEFINED BY
CONCLUSIVE DIAGNOSES BUT MANY
WILL LIST THOSE SUSPICIOUS BUT
DIDN'T HAVE THE LEVEL OF
EVIDENCE REQUIRED TO MAKE IT
MORE CONCLUSIVE.
CONSIDERING THE RANGE IS HELPFUL
AS WELL.
FINALLY, EVEN IF DIAGNOSES ARE
IDENTIFIED AND HOW THE
INFORMATION TRANSLATES TO
MORTALITY STATISTICS AND DEATH
REPORTING IS A FURTHER
CHALLENGE.
WE DID WORK IN THE INFANT
MORTALITY SPACE HOW GENETIC
DIAGNOSES WERE REFLECTED IN
MORTALITY STATISTICS AND FOUND A
SUBSTANTIAL PROPORTION WERE NOT
INCLUDED IN THE DEATH
CERTIFICATE OR UNKNOWN AT THE
TIME OF DEATH OR WEREN'T
APPROPRIATELY CAPTURED IN THE
CODING SYSTEM.
WE TALKED ABOUT IF YOU FIND A
DIAGNOSIS AFTER DEATH AND THE
REPORT HAS BEEN CERTIFIED YOU
CAN GO BACK AND AMEND THE REPORT
TO INCLUDE THE GENETIC DIAGNOSIS
BUT IT HAPPENS I WOULD IMAGINE
INFREQUENTLY.
AS DIAGNOSES ARE IDENTIFIED,
ACCURATELY CAPTURING THE
INFORMATION IS A MAJOR
CHALLENGE.
THIS WAS MEANT TO BE AN OVERVIEW
OF THE STATE OF GENOMIC TESTING
AND I LOOK TOWARDS THE FUTURE
WHERE I HOPE MULTI-CENTERED
COLLABORATIONS CAN LEAD TOWARDS
A BROAD AND DIVERSE APPLICATION
OF GENOMIC AUTOPSY.
IF YOU THINK ABOUT THE
LIMITATIONS IT'S COMING FROM
STUDIES WITH SMALLER SAMPLE SIZE
NOT POPULATION-BASED.
INVOLVING MULTIPLE CENTERS TO
GET THE LARGEST POSSIBLE COHORT
IN ORDER TO LOOK FOR DIAGNOSES
AND BETTER DEFINE THEM IS
CRITICAL TO UNDERSTAND THE TRUE
DIAGNOSTIC YIELD FOR STILLBIRTH.
SECONDLY, THINKING OF DESIGN OF
FUTURE STUDIES AND TAKING THE
BROADEST TESTING APPROACH
POSSIBLE IS A STEP MANY ARE
TAKING.
WE USED TO RELY ON CHROMOSOMAL
TESTING AND NOW MOVING TOWARDS
GENOME SEQUENCING AND IT'S A
TECHNIQUE TO FIND MANY
VARIATION.
MANY STUDIES ARE USING THIS
GOING FORWARD TO TRY TO IDENTIFY
AS MANY DIAGNOSES AS POSSIBLE
AND IT'S POWERFUL WHEN YOU CAN
MATCH UP VARIANTS WITH
COMPREHENSIVE PHENOTYPING.
AN LOOK AT GENOMIC
INTERPRETATION AND COLLECTING
THE INFORMATION IS CRITICAL IF
YOU THINK OF A 20% POTENTIAL
DIAGNOSTIC YIELD IN STILLBIRTH
THAT'S 1 IN 5.
IF YOU CAN FIND AND THESE ARE
RARE CONDITIONS.
IF YOU CAN FIND THE RARE
DIAGNOSES THEY CAN INFORM THE
RISK FOR FUTURE PREGNANCIES.
THIS SAY WAY TO POTENTIALLY
PREVENT STILLBIRTH OCCURRENCE
AND WHERE WE'RE NOT ABLE TO
IDENTIFY MONOGENIC RISK FACTORS
THERE MAY BE A COMBINATION OF
THE RISK FACTORS AND
ENVIRONMENTAL RISK FACTOR FACT
TOGETHER CONTRIBUTE AND REQUIRES
LARGER STUDIES TO DEVELOP THE
POPULATION THAT'S REQUIRED TO
TEST THIS HYPOTHESIS.
I THINK IT WILL BE ANOTHER
BENEFIT GOING FORWARD OF TRYING
TO COLLECT AND TRACK AND HAVE A
DATABASE TO ANSWER THESE
QUESTIONS ON A POPULATION LEVEL.
I'VE TRIED TO GO OVER MANY
THINGS RELATED TO GENOMICS AND
STILLBIRTHS AND I LISTS
REFERENCES OF STUDIES I ALLUDED
TO AND I BENEFIT FROM FANTASTIC
RESEARCH SUPPORT AND ABOVE ALL
HAVE TO THANK THE FAMILIES THAT
HAVE AGREED TO PARTICIPATE IN
THE RESEARCH TESTING THAT'S LED
TO THE INFORMATION WE KNOW
TODAY.
MUCH OF THE TESTING IS NOT
AVAILABLE CLINICALLY AND WE'RE
JUST IMMENSELY THANKFUL TO THE
FAMILIES THAT AGREED TO
PARTICIPATE TO BENEFIT
THEMSELVES AND OTHERS.
I'M HAPPY TO TAKE QUESTIONS IN
THE PANEL THAT FOLLOWS.
>>THANK YOU FOR THE
PRESENTATION AND FOR ANOTHER
PIECE OF THE PUZZLE IN THE ISSUE
OF DATA COLLECTION AND LOOKING
FORWARD TO THE DISCUSSION.
IF YOU'D LIKE TO START YOUR
PRESENTATION THAT WOULD BE
GREAT.
>>ARE YOU GOING PULL IT UP?
>>THANK YOU.
>>I'M A PER I NATAL PATHOLOGIST
AND SPEND MY CAREER LOOKING AT
PLACENTAS FOR DIFFERENT REASONS
INCLUDING STILLBIRTH.
BEFORE I START THIS TALK WHICH
IS A LITTLE BIT DIFFERENT FROM
ALL THE OTHER TALKS, I WANTED TO
OFFER MY SYMPATHY WHO LOST A
CHILD TO STILLBIRTH BECAUSE THE
TALK IS GOING TO BE VERY MEDICAL
AND MAY COME OFF COLD AND I
WANTED TO APOLOGIZE IN ADVANCE
BECAUSE I KNOW IT'S A VERY
EMOTIONAL TOPIC IN THE PLACENTA
IT'S VERY CLOSE TO THE CAUSE OF
DEATH.
I WANTED TO START WITH A NICE
NORMAL PLACENTA BECAUSE WE'LL
SEE ABNORMAL PLACENTAS.
THIS IS A NICE NORMAL COLOR AND
THE NEXT SLIDE IS A REVIEW OF
PLACENTAS.
IT'S A VITAL ORGAN FOR THE FETUS
BUT THE LARGEST AND GROWS AND
DIFFERENTIATES ACROSS GESTATION
AND GROWS DIFFERENTLY AND
PROFUSE THE PREGNANT PERSON BUT
THE BLOOD SUPPLIES SHOULD REMAIN
SEPARATE AND THE PLACENTA IS A
RARE ORGAN ONCE REMOVED IS NOT
ALWAYS SENT TO PATHOLOGY FOR
EXAMINATION.
WE NEED CRITERIA FOR EXAMINING
THE PLACENTA.
THIS REVIEWS IT REQUIRES A
SPECIALIZED EDUCATION AND
THERE'S FEW EXPERTS IN PLACENTAL
PATHOLOGY AND CAN PREDICT FUTURE
OUTCOMES AND FOR THIS WORKSHOP
REVEALS THE MOST LIKELY CAUSE OF
DEATH IN A THIRD OF STILLBIRTHS
FROM THE COLLABORATIVE.
STILLBIRTH IS A CRITICAL TRIAGE
CRITERIA IN ALL STILLBIRTH
PLACENTAS SHOULD BE EXAMINED
PATHOLOGICALLY.
WE CAN'T REALLY DO RANDOMIZED
CONTROL STUDIES AND CAN'T EVEN
DO CASE CONTROL STUDIES BECAUSE
WE DON'T REALLY HAVE A CONTROL
SET OF PLACENTAS SINCE NOT ALL
ARE EXAMINED.
WE CAN TALK ABOUT FINDINGS
ASSOCIATED AND SOME WE THINK ARE
CAUSATIONAL.
THESE HAVE BEEN FOUND TO BE
INCREASED IN PREVALENCE AT
STILLBIRTH IN THE PLACENTA AND
THE ONES BOLDED ARE ESPECIALLY
INCREASED IN PREVALENCE AND THIS
IS ALSO FROM DR. PINAR IN THE
STILLBIRTH COLLABORATIVE AND THE
NEXT SLIDE SHOWS PATHOLOGY
PROBABLY CAUSATIONAL WITH OUR
BEST ESTIMATE OF WHAT CAUSES
STILLBIRTH.
AND FEATURES CONSISTENT WITH UM
-- UMBILICAL CORD AND WE USED
TO CALL ABOUT PLACENTAL
INEFFICIENCY AND NOT SO COMMON
OR RARE BUT CRITICALLY IMPORTANT
TO CAUSES OF STILLBIRTHS.
LET'S TALK ABOUT UMBILICAL CORD.
INJURY TO THE UMBILICAL CORD IS
OFTEN LETHAL.
WE CAN TELL THE UMBILICAL CORD
HAS BEEN DAMAGED BY JUST LOOKING
AT THE PLACENTA.
WE LOOK AT IT FOR FLAT REGIONS
AND SUGGESTING COMPRESSION.
FOR COILING ABNORMALITIES AND
FOR INSERTIONAL ABNORMALITIES
AND HISTOLOGICALLY WE CAN TELL
THERE'S BEEN UMBILICAL CORD
OBSTRUCTION WHEN WE SEE BRUISES
IN THE PLACENTA OR FETAL
VASCULAR MALPROFUSION
INTERRUPTION IN THE PLACENTAL
FLOW FROM THE FETUS.
THE NEXT SLIDE IS ABNORMAL
INSERTION OF THE UMBILICAL CORD
AND SEE THE LARGE VESSELS IN THE
MEMBRANES AND THEY'RE EXPOSED
AND EASILY DAMAGED.
THOSE ARE THE VESSELS THAT GO TO
THE PLACENTA FROM THE FETUS OR
BACK TO THE FETUS FROM THE
PLACENTA.
INJURY OR DAMAGE TO THOSE
VESSELS ARE CRITICAL TO THE WELL
BEING OF THE FETUS IN UTERO.
THE NEXT SLIDE SHOWS COILING.
THE UMBILICAL CORD HAS A COIL TO
THE LEFT AND YOU SEE THE HYPER
COILED UMBILICAL CORD AND THE
COILING IS PARTICULARLY LETHAL
BECAUSE IT CAN KINK.
WHEN IT KINKS THERE'S CESSATION
OF BLOOD FLOW TO THE FETUS OR
PLACENTA WHICH CAN BE FATAL.
WE SEE EVIDENCE OF THIS AND THIS
PLACENTA YOU SEE ON THE LEFT IS
FROM A STILLBIRTH.
YOU CAN TELL THAT IMMEDIATELY
LOOKING AT THE COLOR AND IT'S
BROWN OR TAN OR RUDDY.
YOU CAN SEE ON THE RIGHT-HAND
SIDE THIS IS AN UMBILICAL VESSEL
WITH INJURY TO IT AND HAS
PATHOLOGY OF FETAL VASCULAR
MALPROFUSION PROBABLY DUE TO
KINKING FROM THE HYPERCOILED
UMBILICAL CORD.
THE NEXT SLIDE SHOWS FOUR
PICTURES OF FEELAL -- THE SEE
THE WHITE VESSEL WITH A WHITE
THROMBUS IN THE VESSEL.
THAT'S THROMBOTIC DISEASE.
THERE'S DIFFERENT CAUSES BUT THE
MOST COMMON IS UMBILICAL CORD
OBSTRUCTION AND THE HISTOLOGY IS
A BLOOD CLOT ALMOST FILLING THE
VESSEL.
YOU SEE THAT ABOVE ON THE RIGHT
UPPER.
ON THE LEFT SIDE SHOWS TWO
DOWNSTREAM AFFECTS OF POOR
PROFUSION TO THE PLACENTA.
THE NEXT SLIDE I'LL TALK ABOUT
AN INAPPROPRIATELY IMMATURE
BILUS AND THE PLACENTA --
DELAYED VILLOUS AND IF IT
DOESN'T MATURE APPROPRIATELY IT
CAN'T CONTINUE TO NOURISH THE
FETUS WITH GASES AND OTHER
NUTRIENTS.
CORE AND YOU CAN HE SEE THE
VILLI FILLED WITH BLOOD FROM THE
FETUS ON THE RIGHT SIDE YOU SEE
A DELAYED VILLOUS MATURATION AND
HOW MUCH LARGER THE VILLI ARE
AND HOW MUCH MORE CAPILLARIES
THERE ARE IN THE VILLI AND THE
VESSELS ARE NOT WHERE THEY
SHOULD BE AT THE PERIPHERY BUT
MORE CENTRALLY PLACED.
THIS IS AN INEFFICIENT PLACENTA
AND CAN CAUSE SUDDEN FETAL DEATH
IN UTERO.
AND THIS IS WHEN THE PLACENTA IS
NOT PROFUSED WELL BY THE MOTHER
OR PREGNANT PERSON.
THAT'S ASSOCIATED WITH HIGHER
TENSION OR DIABETES BUT OTHER
THINGS CAN CAUSE MATERNAL MASS
PROFUSION AS WELL.
IT'S A CONSTELLATION OF FEATURES
FOR THE DIAGNOSE AND THE
PLACENTA IS SMALL AND THE FETUS
THE FETAL DEMANDS WITH LIMITED
RESERVES PERHAPS CANNOT BE MET
ESPECIALLY WITH LABOR.
IT'S ANOTHER CAUSE OF DEATH IN
UTERO OFTEN INTRAPARTUM.
THE NEXT SLIDE SHOWS FEATURES OF
A SMALL PLACENTA CUT ON CROSS
SECTION.
YOU SEE ON THE RIGHT SIDE NORM
AL PARENCHIMA AND THE FETUS IS
ONLY LIVING OFF HALF THE
PLACENTA WHICH IS ALREADY SMALL.
THIS CAN BE ASSOCIATED WITH POOR
OUTCOME.
AND THIS IS A SUBACUTE ABRUPTION
AND THEY'RE LETHAL AND CAN BE
ACU
ACUTE HAVE NO PATHOLOGY OR
INFARCTION AROUND THE HEMATOMA.
AND WHAT WE SEE IS VESSEL THAT
LOOK JUST LIKE THE VESSELS OF
CORONARY ARTERY DISEASE IN THE
VESSELS PROFUSING THE PLACENTA.
YOU SEE A SMALL ARTERIOLE AND
YOU SEE THE SAME POWER OF
MAGNIFICATION A MUCH LARGER
VESSEL WITH NECROSIS AND SOME
INFLAMMATION.
THIS IS CALLED DECIDUAL
ARTERIOPATHY AND ASSOCIATED WITH
PERINATAL MORBIDITY AND WITH
OTHER FEATURES WITH PERINATAL
MORTALITY.
THE NEXT TWO SLIDES SHOW
DIFFERENT VERSIONS OF THE SAME
PATHOLOGY.
YOU SEE THE NECROSIS AND THE
NEXT SLIDE SHOWS THE CELLS IN
THE VESSEL WALL ALMOST OCCLUDE
THE ATHEROSIS.
AND I WANTED TO SHOW WHAT
HAPPENS TO THE PARENCHYMA AND
THIS IS HYPERMATURATION.
THE VILLI ARE SMALL AND THERE'S
A LOT OF SPACE BETWEEN THEM AND
THAT'S BECAUSE THEY'RE ISCHEMIC.
THEY'RE POORLY DEVELOPED BECAUSE
THEY'RE NOT GETTING ENOUGH
OXYGEN AND THERE ARE THEY CAN'T
PROVIDE THAT TO THE FETUS.
SOME RARE FINDINGS ARE LISTED
HERE.
AND THEY ARE CAUSATIONAL OF A
LOSS.
WE TALKED ABOUT A LARGE
ABRUPTION AND THE NEXT SLIDE
SHOWS A LETHAL ACUTE ABRUPTION
WITH A LARGE PLACENTAL
HEMORRHAGE INDENTING THE
PLACENTA AND WE'RE LOOKING AT
THE MATERNAL SURFACE OR THE
UNDER SIDE THE NEXT SHOWED THE
HISTOL
HISTOLOGY.
SOMETIMES WE SEE THIS.
THIS A BRUFD PLACENTA.
THE VILLI ARE RED BECAUSE
THEY'RE FILLED WITH BLOOD FROM
THE INCREASED PRESSURE FROM THE
ABRUPTION.
THIS IS CALLED INTRAVILLOUS
HEMORRHAGE ONE OF THE THINGS
THAT YOU CAN USE TO SUPPORT A
DIAGNOSIS OF ABRUPTION.
FETAL MATERNAL HEMORRHAGE OR
ANEMIA IS SOMETHING CAN DIAGNOSE
AND WE CAN ALSO DIAGNOSE THE
CHRONIC FETAL MATERNAL
HEMORRHAGE.
A HIGHER POWER PICTURE OF VILLI
AND THE BLUE PURPLE DOTS MIXED
WITH THE RED BLOOD CELLS ARE
IMMATURE RED BLOOD CELLS AND
THAT HAPPENS WITH FETAL ANEMIA
INCLUDING FETAL HEMORRHAGE.
THE NEXT SLIDE I WANT TO TALK
ABOUT THE DEPOSITION.
IT'S A RARE PATHOLOGY BUT HAS A
HIGH STILLBIRTH RATE AND A HIGH
REOCCURRENCE RATE.
IT'S ASSOCIATED WITH IMMUNE
DISORDER, THROMBOPHILIAS AND IN
SECTIONS LIKE SARS COV2.
THE NEXT SLIDE SHOWS WHAT THE
PLACENTA LOOKS LIKE.
THIS SHOWS A CUT SECTION OF THE
PLACENTA.
YOU CAN SEE THE MARBLING OF THE
PLACENTA WITH ALL THE WHITE PINK
TISSUE WHICH IS FIBRIN AND THE
NORMAL PLACENTA.
YOU CAN SEE HOW LITTLE NORMAL
PLACENTA IS PRESENT IN THIS
DEPOSITION AND THE NEXT SLIDE
SHOWS WHAT HAPPENS TO THE VILLI.
THEY'RE BEING SMOTHERED BY THE
FIBRIN AND UNDER GO NECROSIS AND
IT'S NOT PROVIDING OXYGEN TO THE
FETUS.
THE NEXT SLIDE --
>>DR. ROBERTS, WE HAVE TO TRY
TO WRAP UP AS MUCH AS YOU CAN IN
THE NEXT FEW MINUTES TO ALLOW
FOR THE NEXT PRESENTER AND
DISCUSSION.
SORRY.
>>WE CAN SKIP THIS BECAUSE IT'S
RARE.
JUST GO THROUGH TO THE
CONGENITAL INFECTION WE HAVE
ANOTHER TALK ON.
THIS IS THE LAST SLIDE.
I WANTED TO SAY THAT PLACENTAL
PATHOLOGY I BELIEVE IT ANSWERS
THE WHAT AND THE HOW AND I THINK
THAT'S VERY HELPFUL FOR FAMILIES
AND PROVIDERS AND HELPS CLOSURE
AND HELPS WITH AIDING AND
APPROPRIATE GRIEVING AND
PROVIDING FOR CARE IN FUTURE
PREGNANCIES.
>>THANK YOU FOR THE WONDERFUL
PRESENTATION.
WE'RE RUNNING 20, 30 MINUTES
LATE.
WE HAVE DR. SILVER TO GIVE AN
OVERVIEW ABOUT OVERVIEW.
SORRY WE'RE RUNNING BEHIND.
WE STILL WOULD LIKE TO HAVE AT
LEAST 15 TO 20 MINUTE DISCUSSION
IF POSSIBLE.
>>YOU BET.
I'LL TRY TO BE -- APOLOGIZE.
>>IT'S NOT YOUR FAULT.
THANK YOU.
>>THANK YOU.
AT A HIGH LEVEL THERE'S SEVERAL
WAYS STILLBIRTH CAN CAUSE
INFECTION.
ONE IS DIRECT FETAL INFECTION
CAUSING PNEUMONIA WITH SEPSIS
AND WITH VIRAL INFECTIONS EARLY
IN PREGNANCY LIKE RUBELLA AND
CAN DAMAGE THE PLACENTA BY
DAMAGING THE PLACENTA AND
LEADING TO DECREASED BLOOD FLOW
AND OXYGEN AND NUTRIENTS AND/OR
OR THE MOM BECOMES CRITICALLY
ILL AND BABIES SUFFER HYPOXIA
AND DEATH AND IT'S ASSOCIATED
WITH PRETERM LABOR AND THE
ASSOCIATED CONDITIONS WHICH CAN
LEAD TO PRE TERM BIRTH AND
STILLBIRTH.
GOING OVER THESE IN MORE DETAIL
YOU HEARD EXAMPLES LIKE STEPTO
CAUCUS AND MALARIA AND SYPHILIS
CAN AFFECT THE BABY AND PLACENTA
AND OF RECENT INTEREST THE
CORONAVIRUS.
SEVERE MATERNAL ILLNESS IF MOMS
BECOME CRITICALLY ILL IT CAN
LEAD TO STILLBIRTH IN A
STRAIGHTFORWARD WAY AND
INFLUENZA, POLIO AND CORONAVIRUS
ARE GOOD EXAMPLES.
AND WE SEE ANY OF THESE SYMPTOMS
LEADS TO INTERPARTUM DEATH.
OFTEN IF MOM GOES INTO LABOR AND
28 WEEKS WE'LL DO AN EMERGENCY
INTERVENTION, CAESAREAN AND MAY
RESULT IN A STILLBIRTH AND OFTEN
THEY'RE ASSOCIATED WITH
MICROPLASMAS.
AND STREPT CAN CAUSE PNEUMONIA
BUT IT'S SO OVERWHELMING FOR THE
BABY YOU DON'T SEE HISTOLOGIC
EVIDENCE OF INFLAMMATION.
AND CULTURES DON'T PROVE
CAUSALITY.
MANY ARE INFECTIONS.
THEY ARE ASYMPTOMATIC AND THEIR
BABIES ARE COMPLETELY
UNAFFECTED.
AND THERE MAY BE OTHER CAUSES OF
STILLBIRTH AT PRESENT AS WELL.
INFECTION MAY CONTRIBUTE BUT NOT
BE CAUSATIVE OF WHAT YOU DO IN
CASE OF A DOWN SYNDROME BABY
WHERE THERE'S STREPT PNEUMONIA
AND HAMPERED BY A LACK OF
SYSTEMATIC EVALUATION.
DEF AND WE SHOULD ASK THE
QUESTION DOES DATA SUPPORT AN
ASSOCIATION BETWEEN INFECTIONS
AND STILLBIRTH.
IS THERE BIOLOGIC PLAUSIBILITY?
THESE ARE QUESTIONABLE IN TERMS
OF HOW RIGOROUS THEY ARE BUT IS
THERE A DOSE-RESPONSE
RELATIONSHIP AND IS IT
ASSOCIATED WITH FETAL COMPROMISE
AND WOULD THE STILLBIRTH HAVE
OCCURRED WITHOUT THE INFECTION?
IF THE ANSWER IS TRUE THEN IT
PROBABLY WAS THE CAUSE.
AND INFECTIONS CALL STILLBIRTH.
THESE WERE OLDER STUDIES IN
HIGH-INCOME COUNTRIES WHERE
INFECTION CAUSED 15% OF
STILLBIRTHS IN ONE STUDY AND 9%
IN ANOTHER.
AND IT TURNS OUT IN SCRN WAS
13%.
IT'S A PRETTY CONSISTENT NUMBER
IN SURVEY STUDIES AND HIGH
INCOME COUNTRIES.
IT'S IMPORTANT TO NOTE IT'S MUCH
HIGHER IN LOW RESOURCE SETTINGS
IT CAN BE AS HIGH AS 50% IN
AREAS WHERE SYPHILIS AND MALARIA
ARE ENDEMIC.
IN HIGH INCOME COUNTRIES THERE'S
VARIATION IN TERMS OF THE TIMING
OF GESTATION AND THE OLDER STUDY
ABOUT 20% OF INFECTION
STILLBIRTH WERE LESS THAN 28
WEEKS ARE RELATIVELY SMALL
BETWEEN 28 AND 36 WEEKS AND A
COUPLE PERCENT AT TERM.
AND IF YOU LOOK AT THE BARS ON
THE RIGHT OF THE INFECTIOUS
CASES MOST OCCURRED IN THE 20 TO
24 WEEK GESTATION.
THERE WAS A BUMP AT 37 PLUS AND
RELATIVELY SMALL NUMBERS IN
BETWEEN.
ALSO I SHOWED THE SLIDE
PREVIOUSLY BUT THERE IS
DISPARITIES WITH REGARD TO THE
PERCENTAGE OF CASES OF
STILLBIRTH DUE TO INFECTION WITH
A HIGHER PERCENTAGE IN BLACK
WOMEN AND AS THE ANOTHER
OPPORTUNITY TO ADDRESS
DISPARITIES SO AGAIN, I DON'T
WANT TO READ THE PHONE BOOK AND
WE WON'T GO OVER ALL THE
INDIVIDUAL INFECTIOUS CAUSES OF
STILLBIRTH BUT VIRAL INFECTION
WE DON'T KNOW WHAT PROPORTION OF
STILLBIRTHS THEY CAUSE.
IT'S A LACK OF SYSTEMATIC
APPROACH HARD TO CULTURE.
WE CAN CULTURE BACTERIA EASIER
THAN VIRUSES AND YOU HAVE TO
CULTURE WITH INTENT.
IT'S ALSO HARD TO PROVE
CAUSATION.
IN MANY CASES YOU HAVE POS
SEROLOGY BUT WAS NOT THE CAUSE
OF STILLBIRTH AND IMPORTANT
VIRUSES CMB, PARVOVIRUS AND
IMPROVEMENT IN OUTCOMES AND
RESEARCH GOING ON
COXSACKIEVIRUSES ARE MORE
PREVALENT THAN THOUGHT
PREVIOUSLY AND INTEREST IN
CORONAVIRUS.
OVER 130 BACTERIAL INFECTIONS
HAVE BEEN ASSOCIATED WITH
STILLBIRTH.
SOME OCCUR THROUGH WISTERIA AND
SYPHILIS BEING THE BEST EXAMPLES
AND THEY REACH THE BABY BY
UMBILI
UMBILICAL VEIN AND LUNG IS
AFFECTS.
AND MALARIA IS IMPORTANT AND
TREATMENT WITH ANTI-MARLARIALS
AND USING NETS APPEARS TO
IMPROVE OUTCOMES AND SEEMS
PREVENTIBLE FROM WHAT WE KNOW
TODAY.
E. COLI AT 18 CASES OF GROUP E
STREP AND PARVOVIRUS AND
SYPHILIS AND HERPES.
BECAUSE OF SO MANY ORGANISMS AND
EACH CAUSE ONLY A FEW
STILLBIRTHS.
A VARIETY OF STRATEGIES BUT
THERE'S NO QUESTION WE CAN
REDUCE SOME.
SYPHILIS SCREENING AND CHLAMYDIA
TREATMENT AND WE'RE NOT SURE
WHETHER WHAT WE'RE DOING HELPS
BUT THERE'S OPPORTUNITY FOR
RESEARCH AND IMPROVEMENT AND
ANTIBIOTICS FOR MEMBRANES AND
IMMUNIZATIONS FOR VIRUSES
ESPECIALLY WITH THE CURRENT
CLIMATE WE MAY SEE AN INCREASE
IN ADVERSE PREGNANCY OUTCOMES.
SOME PUBLIC HEALTH MEASURES TO
REDUCE WISTERIA AND RESEARCH
FOCUSSED ON INFECTION.
PREVENTION IN LOW AND MIDDLE
INCOME COUNTRIES BUT MALARIA
PREVENTION AND TREATMENT AND HIV
PREVENTION AND TREATMENT ARE
ALSO INCREDIBLY IMPORTANT.
WE NEED MORE RESEARCH.
THERE'S AN OPPORTUNITY TO ASSESS
THE MICROBIOME USING MOLECULAR
TECHNIQUES.
YOU CAN SEQUENCE THE DNA AND RNA
AND WE NEED PROPER COLLECTION OF
TISSUES TO ALLOW FOR DNA
EXTRACTION TO STUDY THIS IN
STILLBIRTH.
THERE'S A HIGH DEGREE OF RNA
DEGRADATION AND NEED TO BE
CORRELATED WITH HISTOLOGY AND
NEED INTERNATIONAL
COLLABORATIONS.
I'LL STOP THERE.
I APOLOGIZE I KNOW THAT WAS WAY
TOO FAST AND WE'LL HAVE TIME FOR
QUESTIONS.
THANK YOU.
>>THANK YOU.
NOW YOU CAN BREATHE.
SORRY WE MADE YOU GO LAST.
>>FIRST, THANK YOU FOR
TREMENDOUS TALKS.
SUMMARIZED A HUGE AMOUNT OF
INFORMATION IN A SHORT TIME.
I'LL TRY TO SUMMARIZE THE MAIN
TAKE HOME POINTS AND HEAR WHERE
THE RESEARCH SHOULD BE GOING.
A LOT OF THE RESEARCH HAS BEEN
BASED ON INVESTIGATION OF
STILLBIRTH.
DR. SILVER DID A GREAT REVIEW OF
THE MANY RISK FACTORS AND
CONDITIONS ASSOCIATED WITH
STILLBIRTHS.
WE'RE NOT AT A POINT EVEN IF YOU
TAKE EVERYTHING WE KNOW WITH THE
RISK FACTORS WE CAN'T PREDICT
AND YOU WANT TO PREDICT
STILLBIRTH AND CAN INTERVENE
WITHOUT CAUSING PRE TERM BIRTH
AND HIGHLIGHTING BIO MARKERS AND
WE DIDN'T HAVE A CHANCE TO GET
INTO WHAT'S GOING ON IN TERMS OF
ISOLATING PLACENTAL CELLS AND
PRODUCTS OF MATERNAL CIRCULATION
AND ULTRASOUND AND IDENTIFYING
THE MICROBIOME AND WE CANNOT
PREDICT PATIENTS AT HIGH ENOUGH
RISK AND IF I SUMMARIZE IT WRONG
CAN JUMP IN AND THE LAST TWO
SLIDES WERE KEY.
THE SLIDE SHOWED HOW BMI
TRANSLATES BY ITSELF TO A HIGHER
RISK OF STILLBIRTH THROUGH
BIOMARKERS IS A THEME OF
BIOMARKERS AND THE FRAMEWORK
SLIDE HOW DO WE TAKE THAT KIND
OF APPROACH TO TACKLE THE
PROBLEM OF STILLBIRTH.
YOU INTRODUCED SOCIAL
DETERMINATES OF HEALTH WHICH ARE
VERY IMPORTANT FACTORS BECAUSE
OBVIOUSLY THAT LEADS TO HEALTH
INEQUITY.
IT'S AN IMPORTANT ROLE NOT ONLY
IN BIOLOGIC AND IN HEALTH
INEQUITIES AND CARE AND HOW DOES
THAT ALL LEAD TO STILLBIRTH.
THEN THE TALK ON GENOMIC TAKING
US THROUGH GENETICS AND GENOMICS
AND PROGRESSING DOWN TO GENOMIC
SEQUENCING AND HOW IMPORTANT IT
IS TO UNDERSTAND TO DO GENOMIC
SEQUENCING AND HOW IT CAN HELP
MANAGE PREGNANCIES AND FINALLY
DR. ROBERTS BEAUTIFUL TALK ON
THE PLACENTAL LESIONS ASSOCIATED
WITH STILLBIRTH AND IMPORTANT TO
UNDERSTAND THE HOW AND WHY
BECAUSE WE WANT TO PREDICT THOSE
LESIONS.
WE HAVE TO HAVE THEM DEFINED AND
CHARACTERIZED.
I'LL TURN IT OVER TO EACH OF YOU
TO SAY WHERE DO YOU SEE THE
RESEARCH NEEDS TO GO BASED ON
WHAT YOU PRESENTED.
I'LL START WITH DR. SILVER.
>>SURE.
SO I WAS GOING RESPOND TO THE
CHAT.
THERE'S A QUESTION IN THERE FOR
DR. ROBERTS.
I DON'T WANT TO ANSWER FOR HER
BUT I THINK THAT'S REALLY AN
IMPORTANT -- HAS THERE BEEN AN
EFFORT TO ASSESS PLACENTAL
FUNCTION WITH IMAGING.
THERE'S BEEN TERRIFIC EFFORTS
AND AGAIN CREDIT TO NICHD AND
THERE'S AMAZING DATA WITH MRI
ASSESSING BLOOD FLOW IN SUB SETS
OF PLACENTAL FUNCTION AND MET
METABOLISM AND THERE'S GREAT
STUFF WITH ULTRASOUND.
I'D LIKE TO EMPHASIZE BIOMARKERS
AND ULTRASOUND.
I THINK WE NEED TO DO A TON BUT
THE ONE TOOL IN OUR TOOLBOX D
TODAY IS DELIVERY AND DECIDING
WHETHER 36 WEEKS IS THE OPTIMAL
TIME FOR DELIVERY AND GETTING
BETTER AT DIFFERENTIATING AGAIN
A 1 AND 3,000 STILLBIRTH RISK IS
WHAT I'M MOST EXCITED ABOUT.
>>THAT'S DIFFICULT IN TERMS OF
COMING UP WITH THE STUDIES FOR
PREDICTION.
WE'RE WORKING ON ULTRASOUND AND
MRI AND BIOMARKERS DURING THE
PREGNANCY TO HELP PREDICT RISK.
PROBLEM IS WITH THE COHORT YOU'D
HAVE TO HAVE A HUGE COHORT TO
PREDICT STILLBIRTH.
AND LOOKING AT PATIENTS WITH
FETAL GROWTH RESTRICTION TO GET
TO THE STILLBIRTH.
HOW DO WE STUDY THE BIOMARKERS
WITHOUT HAVING TO HAVE A STUDY
OF LIKE --
>>ALL THE ABOVE.
IT'S INCREDIBLY HARD AND I DON'T
WANT TO MONOPOLIZE MORE THAN I
ALREADY AM.
THE HOLY GRAIL OF BIOMARKER
PREDICTION AND ULTRASOUND
ASSESSMENT HAVE BEEN IN THE
FIRST TRIMESTER THINKING IF WE
CAN IDENTIFY RISK EARLY ON WE
CAN MODIFY THE RISK AND IT'S A
GOOD HOLY GRAIL BUT RIGHT NOW
WE'RE LIMITED TO THINGS LIKE
ASPIRIN AND THERE'S VALUE AND
LIMITATIONS.
WE HAVEN'T FOCUSSED AS MUCH ON
36 WEEKS.
I THINK THAT'S A REAL
OPPORTUNITY.
SECOND, YOU'RE RIGHT, THE
STUDIES ARE INCREDIBLY EXPENSIVE
TO DO.
SOME COMBINATION OF A PREGNANCY
OUTCOME AND THERE'S PATHOLOGY IN
THE HYPERTENSIVE DISORDERS AND
CREATIVITY AND COMBINING COHORTS
SO THAT NO SINGLE ENTITY HAS TO
FUND THE ENTIRE THING.
YOU'RE RIGHT, IT'S EASY TO SAY
AND HARD TO DO.
>>DO WE DO IT AT THE TIME OF
FETAL GROWTH RESTRICTION AND
PREECLAMPSIA.
>>FIRST WE HAVE TO PROVE
THERE'S AN ASSOCIATION IN
REPRODUCIBILITY.
THERE'S SO MANY THINGS WE CAN
ASSESS IN ULTRASOUND AND HAVE TO
DO SMALLER STUDIES TO JUSTIFY
LARGER STUDIES AND SO ON AND SO
FORTH AND PROBABLY SOME
COMBINATION OF SMALLER STUDIES
IN VERY SELECTED HIGH RISK
PATIENTS LIKE FETAL GROWTH
RESTRICTION BUT I'M GLAD WE'RE
HAVING THE CONVERSATION.
>>GREAT.
>>I'VE BEEN AROUND BOB LONG
ENOUGH TO KNOW I SHOULD AGREE
WITH BOB.
I DO, IT TURNS OUT.
THERE'S NOT ONE OPTIMAL DESIGN
TO ADDRESS THIS BUT I MENTIONED
IN MY TALK, I THINK TAKE LESS
ADVANTAGE OF THE COMMONALITY OF
HOW BIOLOGICAL TRANSDUCTION
OCCURS IN THE UTERUS AND HOW
ADVERSE OUTCOMES TAKE AWAY AND I
UNDERSTAND THE REASONS WHY WE DO
SPONTANEOUS BIRTH RESEARCH AND
PRE TERM AND PREECLAMPSIA.
THERE IS ENOUGH CONVERGENCE THAT
I THINK WE CAN IMPACT THE
OUTCOMES BY APPRECIATING THEIR
COMMONALITY.
THERE'S ENOUGH COMMONALITY OF
RISK FACTORS AND BIOLOGICAL
DESCRIPTION IN THE SUBOPTIMAL
MILIEU.
THAT APPROACH AND DESIGN PEOPLE
HAVE PHILOSOPHIZED BUT IT'S
POSSIBLE TO DO IN COHORT STUDY
WITH AND CREATING A COHORT STUDY
BY OVER SAMPLING LATE PREGNANCY
AT THE TIME OF ADVERSE OUTCOMES.
I UNDERSTAND THE REASONS WHY FOR
RESEARCH BUT AROUND THIS SET OF
DECISION MAKING AROUND
STILLBIRTH AND THE MAJORITY OF
ADVERSE PREGNANCY OUTCOMES LIKE
LATER PRE TERM BIRTH AND
PREECLAMPSIA AND STILLBIRTH,
THERE'S MERIT STILL IN LATER
PREGNANCY.
YOU CAN CREATE A PROSPECTIVE
COHORT.
THERE'S MERIT IN THAT APPROACH.
THE CONTEXT IN TERMS OF DATA
ELEMENTS AND RESEARCH NEEDED,
YOU TALKED ABOUT THAT ONE SLIDE
FROM SDOH TO BIOLOGICAL
TRANSDUCTION TO OUTCOMES, YOU
CAN'T BE A 30-YEAR STUDY OF
100,000 PEOPLE AND MEASURE
EVERYTHING AND EVERYONE.
IT'S TOO BIG AND TOO BROAD IN
ALL THREE DIMENSIONS.
WE CAN HAVE ENOUGH ATTENTIVENESS
TO REPRESENT THEM TO A DEGREE.
WE COULD DO THAT IN THE CONTEXT
OF A COHORT CASE COHORT STUDY
POP
>>THANK YOU.
DR. WOJCIK.
>>THE TECHNOLOGY WE HAVE TODAY
IS SO MUCH MORE POWERFUL IN OUR
CAPACITY TO IDENTIFY GENETIC
CONDITIONS WHICH CAN CO-OCCUR
WITH SO MANY OTHER PREGNANCY
COMPLICATIONS.
IT'S INCREASED IN THE PAST
SEVERAL YEARS.
IT WOULD BE A REALLY POWERFUL
TOOL TO APPLY IN THE
INVESTIGATIONS TO IDENTIFY
PARTICULARLY FOR NON-ANOMALY
PREGNANCIES WHERE NO ONE
SUSPECTED SOMETHING GENETIC.
WE FIND DIAGNOSES THAT HAVE
IMPLICATIONS FOR FUTURE
PREGNANCIES.
THERE'S SO MUCH UNKNOWN AND
GIVEN OUR CAPACITY FOR
SEQUENCING THE MINIMAL SAMPLE
REQUIREMENTS I THINK GENOMIC
ASPECTS SHOULD BE INCLUDED IN
ANY STUDY INVESTIGATING
STILLBIRTH BECAUSE WE DON'T NOAH
WE DON'T KNOW AND IF THERE'S A
SECOND CAUSE SOMETIMES THEY CAN
HAVE IMPLICATIONS FOR FUTURE
PREGNANCIES.
ENCOURAGE APPLICATION OF THE
TOOLS WE ALREADY HAVE TO HELP
IDENTIFY PARTICULARLY THE
UNSUSPECTED DIAGNOSES.
>>MONICA, SHOULD EVERY
STILLBIRTH HAVE ULTIMATELY A
WHOLE GENOME SEQUENCING DONE?
THERE MAY BE GENETIC ISSUES WE
DON'T KNOW OF RIGHT NOW WE MAY
DISCOVER DOWN THE ROAD.
WE'RE TALKING HALF $500,000 AND
$1 MILLION PER STATE.
IF YOU THINK 24 TIMES $1,000 OR
LESS PER WHOLE GENOME SEQUENCING
WE'RE NOT TALKING ABOUT AN
ENORMOUS AMOUNT OF MONEY.
>>I AGREE ESPECIALLY COMPARED
TO THE OTHER COSTS INCURRED WITH
STILLBIRTH AND OTHER
INVESTIGATIONS BEING UNDERTAKEN.
THE COST NOT AS ASTRONOMICAL AS
IT ONCE WAS AND NOT ALL FAMILIES
WANT IT BUT SHOULD BE OFFERED AS
AN OPTION.
MAYBE I'M BIASSED BUT I FEEL
LIKE EVERYONE WHO LOSES A
PREGNANCY SHOULD BE OFFERED TO
ACCESS AS BROAD GENETIC TESTING
AS WE CAN.
>>I'M REMINDED FROM THE FIRST
SESSION WE HAD WHEN ONE OF THE
MOTHERS WHO GAVE A PRESENTATION
SAID YEARS LATER SHE STILL
REGRET THE FACT NO AUTOPSY WAS
DONE AND GENETIC INFORMATION ON
THE BABY THAT DIED WAS MISSING
FROM THEIR LIFE NOW WHICH HER
SUBSEQUENT PREGNANCY AND IF
NOTHING ELSE A NORMAL GENOME
WOULD GIVE COMFORT TO THE
PARENTS.
>>NICHD IS FUNDING THE STUDY ON
SEQUENCING AND TRIOS FOR
STILLBIRTHS AND PARENTS AND NGH
FOR THE GROWTH.
GETTING THAT DATA IS SO
IMPORTANT AND THAT WILL COMPEL
INSURERS TO COVER IT BECAUSE
IT'S DIFFICULT TO GET THE
COMPLETE EVALUATION COVERED BY
INSURANCE IN A LOT OF PLACES.
>>THE ANTI-NATAL PATHOLOGY
SHOULD BE THE FOCUS OF THE
PROJECT.
MANY THINGS ARE POSSIBLE NOW BUT
ARE JUST NOT BEING DONE.
I CAN'T TELL YOU HOW MANY
STUDIES I'VE BEEN ON WHERE THEY
DESCRIBED SOMETHING IN THE
PLACENTA AND I WANT TO SEE THE
ULTRASOUND CORRELATION BUT THEY
ARE DIDN'T LOOK AT THE PLACENTA
OR COMMENT ON THE PLACENTA AND
THERE'S NO CLIPS.
THE PLACENTAL DIAGNOSIS YOU HAVE
TO KNOW WHAT YOU'RE LOOKING FOR
BUT LOOKING FOR THAT IS WHAT
SHOULD BE THE FOCUS.
>>DR. SILVER.
>>YOU WANTED TO THROW OUT
ANOTHER.
IT WAS GREAT TO SEE ALL THE
TALKS THIS AFTERNOON AND WE
CAN'T LOOK AT ANY ONE OF THESE
IN A VACUUM.
IT WOULD BE GREAT FOR EVERY
STUDY TO HAVE THE HISTOLOGY AND
WHOLE GENOME SEQUENCING.
I HOPE THE WHOLE TESTING
EXERCISE LEADS TO COLLABORATION.
WHETHER THAT'S A NETWORK EBB OR
ENCOURAGEMENT OF MULTI-CENTERED
RO1s.
IF WE DO ANY IN A VACUUM WE
WON'T GET AS FAR AS PUTTING THEM
ALL TOGETHER.
>>UMA, ONE QUICK COMMENT I'LL
MAKE IS THAT BEFORE DR. BIANCHI
WRAPS UP THE ENTIRE CONVERSATION
OF THE DAY, THAT FROM A RESEARCH
PERSPECTIVE IT WOULD BE
WONDERFUL TO KNOW HOW MANY OF
THE STILLBIRTHS ARE PREVENTIBLE
AND AND WHERE THE MOST BANG FOR
THE BUCK ULTIMATELY WOULD BE AND
THAT WAY THAT COULD ACTUALLY
DIRECT SOME OF THE RESEARCH
INITIATIVES THAT ULTIMATELY
COULD FORM BASIS OF OUR PUBLIC
HEALTH INTERVENTIONS.
THAT'S ALWAYS HARD TO FIGURE OUT
WITH EVERY DIAGNOSTIC TEST WE
PUT IN PLACE THERE ARE
INTERVENTIONS THAT HAPPEN THAT
ARE HARMFUL TO NORMAL BABIES
LIKE YOU MENTIONED EARLIER IN
YOUR INTRODUCTION ABOUT ELECTIVE
C SECTIONS OR PRE TERM BIRTHS
TRIGGERED BY FALSE ALARM AND
SOMETHING TO THINK ABOUT AS WE
GO THROUGH THE EXERCISE.
WHERE WILL THE MOST BANG FOR OUR
BUCK BE.
>>ACTUALLY, THE COMPONENTS YOU
LISTED AND ON TOP OF THAT WE
HEARD ABOUT MATERNAL INTERVIEWS
AND TALKING TO PARENTS ABOUT
THEIR EXPERIENCE.
AND COME UP WITH A STUDY TO DIG
DEEP INTO THIS.
ALL RIGHT.
I THINK I'LL HAND IT OVER TO
DR. BIANCHI.
THANK YOU ALL FOR THE WONDERFUL
TALKS TODAY AND TO THE EXCELLENT
QUESTIONS.
>>THANK YOU, DR. REDDY,
DR. JAIN, DR. LONGO AND ALL THE
SPEAKERS BOTH IN THE MORNING AND
AFTERNOON.
MY JOB IS NOT TO WRAP IT UP
BECAUSE I THINK THE CO-CHAIRS
AND MODERATOR HAVE DONE A GREAT
JOB WRAPPING UP THE DISCUSSIONS.
MY JOB IS TO TELL YOU WHAT'S
NEXT.
IF I CAN HAVE THE SLIDE.
THE NEXT STEP IS A PUBLIC
LISTENING SESSION AFTER THE
HOLIDAYS THURSDAY JANUARY 5
BETWEEN 3:00 AND 5:00.
WE NEED YOU TO REGISTER FOR THE
MEETING TO BE LET IN USING THIS
CODE, I'LL GIVE YOU A MOMENT TO
LOOK AT THIS.
AFTER YOU REGISTER YOU'LL GET A
ZOOM CONFIRMATION E-MAIL
CONTAINING INFORMATION ABOUT
JOINING THE MEETING.
THERE WAS A QUESTION WHETHER
THIS WAS ESE IT SAYS EDT BUT
YES, THE SESSION WILL BE BETWEEN
3:00 AND 5:00 EAST COAST TIME.
WHEN YOU REGISTER WE'LL ASK
REGISTRANT TO IDENTIFY WHETHER
THEY'LL SPEAK ON BEHALF OF AN
ORGANIZATION OR AS AN INDIVIDUAL
WITH LIVED EXPERIENCE SO WE CAN
FIT IN AS MANY PERSPECTIVES AS
POSSIBLE WE'RE GOING ASK IF
THERE'S A REGISTERED
ORGANIZATION AND WE KNOW THERE
ARE SEVERAL IN THE SPACE, THAT
YOU IDENTIFY ONE SPOKESPERSON
WHO IS GOING TO SPEAK ON BEHALF
OF THAT ORGANIZATION.
WE WILL THEN ASSESS HOW MANY
PEOPLE REGISTER TO SPEAK AND
THAT WILL DETERMINE HOW MUCH
TIME EACH SPEAKER GETS.
SOME ORGANIZATIONS, FOR EXAMPLE,
THAT HAVE A LOT OF MEMBERS,
YOU'LL HAVE TO MAKE A DECISION
WHETHER YOU WANT ONE PERSON
SPEAKING ON BEHALF OF THE
ORGANIZATION AND THAT PERSON
WILL GET MORE TIME, FOR EXAMPLE,
OR IF YOU WANT EACH INDIVIDUAL
TO SPEAK PERSONALLY ABOUT THEIR
EXPERIENCE THAT WAY THERE'LL BE
MORE PEOPLE SPEAKING AND LESS
TIME PER PERSON IF THAT MAKES
SENSE.
WE ALSO ENCOURAGE YOUR WRITTEN
COMMENTS.
THERE WAS A REQUEST FOR
INFORMATION.
IF YOU GO TO THIS LINK WHICH IS
N-O-T--H-D-2504 IS YOUR
OPPORTUNITY TO PROVIDE COMMENTS
PERMANENT FOR THE RECORD AND WE
ARE SOLICITING INPUT REGARDING
THE DEVELOPMENT OF STRATEGIES TO
INCLUDE THE IMPACT OF NIH FUNDED
RESEARCH ON STILLBIRTHS.
AS DR. CERNICH COMMUNICATED OUR
MISSION IS TO PROVIDE EVIDENCE
FROM RESEARCH THAT IS THEN GIVEN
VIA PUBLICATIONS TO PROFESSIONAL
SOCIETIES WHO THEN MAKE
RECOMMENDATIONS REGARDING
TREATMENT.
WE CANNOT RECOMMEND A SPECIFIC
TREATMENT.
WE CAN DO IMPLEMENTATION
RESEARCH AND ALL KINDS OF
RESEARCH THIS IS YOUR CHANCE TO
WRITE IN REQUEST FOR
INFORMATION.
WE THINK RESEARCH IS SERIOUSLY
NEEDED ON A, B, C OR D.
WE'LL ACCEPT RESPONSES THROUGH
JANUARY 6 AND MUST BE SUBMITTED
ELECTRONICALLY TO THE FOLLOWING
E-MAIL ADDRESS.
NICHDSTILLBIRTH@MAIL.NIH.gov.
THEN WE'LL REVIEW THE
RECOMMENDATIONS FROM ALL FOUR
MEETINGS INCLUDING THE UPCOMING
PUBLIC LISTENING SESSION AND THE
CO-CHAIRS OF THE TASK FORCE WILL
PRESENT THEM TO ME FOR
CONSIDERATION DURING THE JANUARY
COUNCIL MEETING.
THIS IS OUR REGULARLY SCHEDULED
ADVISORY COUNCIL MEETING.
THERE IS A PUBLIC SESSION TO
HEAR WHAT IS SAID REGARDING THE
RECOMMENDATIONS AFTER ALL FOUR
MEETINGS.
THERE WILL ALSO BE A WRITTEN
REPORT AND AFTER THE CO-CHAIRS
SUBMIT THEIR WRITTEN REPORT,
WE'LL EXAMINE BOTH OUR CURRENT
SPECIFIC PRIORITIES.
YOU HEARD WE'RE ALREADY FUNDING
RESEARCH IN THE SPACE AND THE
CURRENT PROGRAMS WE HAVE THAT
ADDRESS STILLBIRTH AND THEN WILL
SEE WHAT'S MISSING.
WHERE ARE THE GAPS AND WHERE
WE'RE ALIGNED WITH THE
RECOMMENDATIONS AND WHERE THE
THE GAPS.
WE'LL ALSO SHARE THE REPORT WITH
OUR FEDERAL COLLEAGUES MANY OF
WHOM ARE PARTICIPATING AS
PANELISTS OR EX-OFFICIO MEMBERS
TODAY AND IN PREVIOUS SESSIONS
AND THEY CAN HELP DETERMINE
ACTION ITEMS WITHIN THEIR SCOPE
AND MISSION.
YOU HEARD ABOUT CDC'S ROLE IN
THE OVER ALL ECO SPHERE AND
REMEMBER IF WE GET MORE FUNDING
FOR RESEARCH WE CAN EXPAND
PROGRAMS.
WE CANNOT GO DIRECTLY TO
CONGRESS.
THAT IS NOT THE ROLE OF FEDERAL
OFFICIALS TO DO THAT.
IT'S CLEAR THE NRPZ SPEAK FOR
THEMSELVES IN TERMS OF
STILLBIRTH.
I THINK A STRONG CASE CAN AND
WILL BE MADE MORE NEEDS TO BE
DONE.
WE LOOK FORWARD TO YOUR INPUT.
WE HAVE BEEN LISTENING BUT THIS
WILL BE A FORMAL SESSION FOR ALL
OF YOU TO TELL US WHAT YOU THINK
WE NEED TO KNOW BOTH AT THE
FOURTH SESSION AND ALSO IN
WRITING.
SO WITH THAT, RECOGNIZING THAT
THE HOLIDAYS MAY BE A SAD TIME
FOR SOME OF YOU BECAUSE OF THE
LOSSES IN YOUR FAMILY, I DO HOPE
THAT EVERYONE HAS A CHANCE TO
ENJOY WHATEVER RITUALS YOU HAVE
AND EVERYONE WILL BE HEALTHY AND
WE'LL SEE YOU IN THE NEW YEAR.
THANKS AGAIN TO EVERYONE WHO'S
MADE THIS HAPPEN INCLUDING OUR
NICHD STAFF AND CONTRACTORS WHO
ARE HELPING US WITH THE AUDIO
VISUAL ASPECTS OF THE MEETING.
TAKE CARE EVERYBODY.
THANK YOU.