>> I WANT TO WELCOME EVERYONE TO
THE MEETING OF THE NICHD
STILLBIRTH WORKING GROUP OF
COUNCIL. I'M THE DEPUTY
DIRECTOR OF THE KENNEDY SHRIVER
DEPARTMENT OF HUMAN DEVELOPMENT.
WE LOOK FORWARD TO HEARING FROM
SO MANY THAT HAVE ASKED TO SHARE
THOUGHTS WITH THE WORKING GROUP
AND WANT TO LET YOU KNOW AND
INTRODUCE THE CO-CHAIRS AND
DIRECTOR OF THE INSTITUTE AND
LET YOU KNOW THEY WILL BE WITH
US THROUGHOUT THIS LISTENING
SESSION AND WANT TO GIVE AS MUCH
TIME AS POSSIBLE TO HEARING FROM
YOU AND RECOGNIZE THAT THERE BE
DIANNE THE DIRECTOR THE KENNEDY
SHRIVER NATIONAL INSTITUTE OF
HUMAN HEALTH AND DEVELOPMENT AND
[INDISCERNIBLE] WHO MAY OR MAY
NOT BE ON CAMERA THE WHOLE TIME.
WE WANT TO ALSO SPOTLIGHT YOU
AND MAKE SURE WE SEE YOU AS THE
MODERATOR AS WE ASK YOU TO KEEP
YOUR COMMENTS RESPECTFULLY
WITHIN [INDISCERNIBLE]. I WANT
YOU TO KNOW THEIR CAMERAS MAY BE
OFF BUT ARE LISTENING AND
SHARING A SUMMARY OF THE FULL
MEETING WITH THE FULL WORKING
GROUP AND [INDISCERNIBLE].
JUST IN TERMS OF LOGISTICS FOR
TODAY, WE HAVE RECEIVED A ROBUST
RESPONSE FOR THE MEETING FROM
ORGANIZATIONS THAT REGISTERED TO
COMMENT DURING THIS SESSION.
DUE TO RECENT UPDATES WE
RECEIVED THIS MORNING, THE ORDER
MAY CHANGE FROM THE INITIAL LIST
YOU RECEIVE AND SLIGHT CHANGE IN
TIMES YOU ARE PRESENTING AND
MAKING SURE THAT EVERYONE WHO
REGISTERED TO COMMENT IS
COMMENTING AND IF YOU SEE AN
E-MAIL FROM US GIVING YOU A TIME
AND SOMETHING GOES WRONG, WE CAN
TRY TO ADJUST AS POSSIBLE. FOR
THOSE WHO REGISTERED AFTER THE
NOON DEADLINE ON JANUARY 4TH,
YOU CAN VIEW THE SESSION LIVE ON
VIDEO CAST. AFTER THE SESSION
YOU ARE WELCOME TO SUBMIT
COMMENTS TO NATASHA WILLIAMS AT
NIH.GOV. I BELIEVE SHE HAS
E-MAILED YOU ALREADY AND PLEASE
NOTE THE SESSION WILL BE LIVE
AND RECORDED. SUBSEQUENT
REPORTING WILL BE POSTED ON THE
NIH VIDEOCAST.
FOR ORGANIZATIONS THAT
IDENTIFIED MORE THAN ONE
SPOKESPERSON, WE ASK THAT ONE
REPRESENTATIVE SPEAK FOR THE
ORGANIZATION AND OTHERS SPEAK AS
INDIVIDUALS.
BASED UPON THE NUMBER OF THOSE
REGISTERED, WE HAD PREVIOUSLY
SHARED WITH YOU ORGANIZATIONS
WILL HAVE FIVE MINUTES TO SPEAK
AND INDIVIDUALS WILL HAVE THREE
MINUTES TO SPEAK TO MAKE SURE WE
ARE RESPECTFUL OF ALL YOUR TIME
AND WE CAN TRY TO ACCOMMODATE TO
THE GREATEST EXTENT POSSIBLE
GIVEN A LITTLE OF EXTENSION OF
THE TIME THAT WE HAVE AVAILABLE
AND WE HAVE THE VIDEOCAST
AVAILABLE UNTIL 6 AND WILL HAVE
A HARD STOP AT 6. THE ORDER OF
THE ORGANIZATIONS AND
INDIVIDUALS TO GIVE COMMENTS WAS
BASED UPON THE TIME AND DATE OF
REGISTRATION.
WE WILL ASK SPEAKERS TO TURN ON
THEIR CAMERA AND INTRODUCE
THEMSELVES AND HOWEVER IF YOU
ARE NOT COMFORTABLE BEING ON
CAMERA, PLEASE LET US KNOW.
DON'T TURN ON YOUR CAMERA.
PLEASE PROCEED WITH
[INDISCERNIBLE]. I WILL TURN ON
MY CAMERA WHEN ONE MINUTE IS
LEFT FOR YOUR COMMENT. YOU WILL
SEE IT APPEAR. I WILL SIGNAL
YOU WHEN THERE ARE 15 SECONDS
LEFT FOR YOUR REMARKS IF YOU ARE
NOT JUST ABOUT TO WRAP UP.
THE ZOOM CHAT FUNCTION WON'T BE
AVAILABLE. WE THOUGHT IT WOULD
BE A DISTRACTION DURING THE
MEETING TO HAVE THAT.
IF YOU HAVE LOGISTICAL QUESTIONS
OR YOU HAVE QUESTIONS FOR OUR
ADMINISTRATIVE STAFF, YOU NEED
TO JUST -- I THINK IT WAS
PROVIDED TO YOU AS WELL TO
E-MAIL NICHD LOGISTICS IS ALL
ONE WORD. NICHD EVENT LOGISTICS
AT BIZZEL -- BIZZELLUS.COM.
SCREENSHARE WON'T BE AVAILABLE
IN THE ZOOM FUNCTION IF YOU WANT
TO SHARE SOMETHING WE ASKED YOU
SEND IT TO THE MEETING
ORGANIZERS WE WILL SHARE SLIDES
WITH ANYONE WHO IS WILLING TO
SHARE THEM. I WILL PAUSE FOR A
MOMENT TO MAKE SURE I DID NOT
MISS ANYTHING.
MA HOG ANY, ARE WE GOOD TO GO?
WE ARE STARTING AT 3:10 BUT IF
SUZANNE IS AVAILABLE, WE CAN GET
STARTED. SUSANA IS AVAILABLE.
ANTHONY, IF YOU WOULD LIKE TO
DISPLAY SUSANA'S SLIDES, PLEASE.
WE CAN BEGIN. SUSANA, YOU WILL
BE SPOTLIGHTED. I WILL GO OFF
CAMERA BUT COME BACK ON. THANKS
VERY MUCH FOR JOINING US TODAY.
PLEASE GO AHEAD AND INTRODUCE
YOURSELF AND BEGIN.
>> THANKS SO MUCH. CAN YOU LET
ME KNOW AND HEAR ME OKAY?
>> I CAN.
>> PERFECT. THANKS SO MUCH. I
WOULD LIKE TO ACKNOWLEDGE LABOR
OVER MANY YEARS OF DEBBIE ON
BEHALF OF HER STILLBORN DAUGHTER
AUTUMN JOY TO PASS FEDERAL
LEGISLATION THE SHINE FOR
FEDERAL ACT.
I'M SUZANNE LESHER AND GLOBAL
STILLBIRTH ADVOCATE AND REASON I
WORK ON STILLBIRTH IS MY FIRST
CHILD WILDER DANNI EL. THIS IS
A PICTURE OF ME VERY PREGNANT
WITH WILDER EXCITED TO BECOME A
FIRST TIME MOTHER. DID
EVERYTHING RIGHT AND WENT TO
PRENATAL APPOINTMENTS GAVE UP
COFFEE AND ALCOHOL AND READIED
THE NURSERY TO WELCOME OUR BABY
HOME. I NOTICED THE BABY
STOPPED MOVING. CALLED MIDWIFE
TOLD ME TO DRINK JUICE TO WAKE
THE BABY UP. HOUR LATER
COULDN'T STANT WAITING ANYMORE
WENT INTO THE HOSPITAL TO MAKE
SURE EVERYTHING WAS OKAY.
MATERNITY FLOOR TECHNICIAN
SMEARED GELL ON MY BELLY TO
LISTEN FOR A HEAT BEAT. I HEARD
STATIC AND KNEW RIGHT AWAY AND
HIT COMMENT HARD WITH MY HAND
AND YELLED WHAT IS GOING ON. HE
WORN BORN JULY 13TH 1999. MY
PREGNANCY WAS NEAR PERFECT.
DESPITE AN AUTOPSY AND EVERY
POSSIBLE TEST NO CAUSE WAS EVER
FOUND FOR WILDER'S DEATH.
PERIONTOLOGIST TOLD US SOMETIMES
THESE THINGS JUST HAPPEN. MY
LIFE IS COMMITTED TO REJECTING
THAT STATEMENT. NEXT SLIDE,
PLEASE.
THERE IS A GREAT DEAL WE CAN AND
MUST ACHIEVE THROUGH RESEARCH.
I HAVE INCLUDED A FEW TOP POINTS
HERE. FIRST, LET'S USE GLOBAL
METRICS ACKNOWLEDGING POOR
PERFORM ANXIETY ON THE GLOBAL
STAGE. IN APPLES TO APPLES
COMPARISON USING WORLD HEALTH
ORGANIZATION DEFINITION AT
STILLBIRTH AT 28 OR MORE WEEKS
AND RECENT GLOBAL STILLBIRTH
DATA ANALYZED BY UNICEF. THE
STIL RATE IS HIGHER THAN OTHER
HIGH INCOME COUNTRIES
NETHERLANDS JAPAN KOREA AND
SPAIN AND WE DON'T HAVE TO
REINVENT THE WHEEL COLLABORATING
WITH TOP PERFORMERS OR STIL
BIRTH PREVENTION AND BEREAVEMENT
CARE WE HAVE ENORMOUS AMOUNT TO
LEARN FROM COLLEAGUES AND FROM
AUSTRALIA WITH WORLD'S
COMPREHENSIVE FULLY GOVERNMENT
FUNDED STILLBIRTH RESEARCH OF
EXCELLENCE AND COUNCIL ON
AUSTRALIAN ABORIGINAL EXPERTISE
AND -- FROM THE UK, A LEADER IN
PARENT INVOLVEMENT IN PERINATAL
AUDIT AND CO-PRODUCTION OF
RESEARCH -- AND FROM CANADA,
WITH EXTENSIVE RESEARCH ON FIRST
NATION STILLBIRTH RESEARCH RISK
FACTORS AND PREVENTION
APPROACHES.
THIRD, LET'S REDEFINE WHAT WE
CONSIDER TO BE PREVENTABLE.
USING 28 WEEK DEFINITION IF US
MATCHED THE LOWEST NATIONAL
STILLBIRTH RATE WHICH WAS IN
JAPAN AT 1.4 STILLBIRTHS PER
TOTAL -- THERE ARE NO KNOWN
BIOLOGICAL FACTORS PREVENTING
OUR ACHIEVING THIS. 4TH, IT IS
CRITICAL TO ACKNOWLEDGE PARENTS
IN EXPERTS IN OUR EXPERIENCE OF
STILLBIRTH CO- -- NORMALIZED
WELCOMING PARENTS AS ALLIES.
4TH, RESEARCH SHOULD FOCUS ON
UNAND UNDERINVESTIGATED AREAS TO
UNCOVER NEW RISK FACTORS
EXPLORING AREAS TO IMPROVE
UNDERSTANDING AND RECENT US
NATIONAL DATA FROM 2020 SHOWED
31% OF STILLBIRTHS HAD NO
IDENTIFIED CAUSE AND PERSISTENT
RACIAL DISPARITIES WHERE THERE
IS DOUBLED RISK OF STIL ABOUT
IRJ IN BLACK AND RECENT FAMILIES
FOR LAST 100 YEARS AND RESEARCH
-- FACTORS UNDER OR UNEXAMINED
CAN HELP TO ADDRESS GAPS AND
SUCH FACTORS RANGE FROM
EPIGENETIC MECHANISMS FROM
UPSTREAM HEALTH SYSTEM AND
STRUCTURAL FACTORS INCLUDING
BIAS AND FORMS OF RACISM AND
FIFTH, IT IS VITAL WE PRIORITIZE
TIMELY AND ACCURATE DATA
COLLECTION FOR INSTANCE APPLYING
LESSONS LEARNED FROM IMPROVING
BIRTH CERTIFICATE DATA TO
ADDRESS POOR FETAL DEATH
CERTIFICATE QUALITY AND
EXTENDING TO MEMBERS FROM
WORKING GROUP FOR YOUR TIME AND
COMMITMENT TO END PREVENTABLE
STILLBIRTHS IN US IS TO WORK
TOGETHER AND THIS IS A VITAL
STEP TOWARDS THAT FUTURE.
>> I APOLOGIZE FOR THAT ALARM
THAT WAS NOT FOR ME BUT FOR YOU
AND WILL TURN IT OFF. THANKS SO
MUCH AND APPRECIATE THE COMMENT
AND MOVE TO SUBMIT
[INDISCERN.
>> THANK YOU SO MUCH. JAY
WILSON IS SUPPOSED TO SPEAK WITH
ME. CAN YOU SPOTLIGHT HER AS
WELL?
>> I CAN, YEAH.
>> THANK YOU.
>>
>> WHILE YOU ARE GET THAT SET UP
I WILL START. I'M EXECUTIVE
DIRECTOR FOR PUSH FOR EMPOWERED
PREGNANCY A RELATIVELY NEW ORG
LAUNCHING ABOUT A YEAR AND A
HALF AGO WITH MEDICAL
PROFESSIONALS AND LEADING
EXPERTS AND RESEARCHERS FROM
AROUND THE COUNTRY AND GLOBE AND
WE HAVE A SINGLE-MINDED MISSION
TO DRIVE DOWN INCIDENCE PROOEF
VENTABLE STILLBIRTH IN THE US BY
ANY MEANS NECESSARY. I'M A LOSS
MORN MY DAUGHTER A- LANA WAS
BORN 2 DAYS BEFORE HER DUE DATE
IN 2013. NEXT TO ME IS MY
HUSBAND. MANY HERE HAVE HEARD
IT ALREADY BUT IF NOT YOU CAN
FIND IT ALL OVER THE INTERNET.
I JUST WANTED TO TAKE THIS
OPPORTUNITY TO REFOCUS THE
CONVERSATION ON MARGINALIZED
FAMILIES AND IN PARTICULAR BLACK
PARENTS BEARING THE BRUNT OF THE
SILENT EPIDEMIC FOR STILLBIRTH
BIRTH. I WOULD LIKE TO
INTRODUCE MY DEAR FRIEND.
>> THANKS SO MUCH, SAM. I
APPRECIATE THE OPPORTUNITY TO
SHARE THIS SPACE WITH YOU. AS
WELL AS GETTING TO LEARN MORE
ABOUT HOW WE CAN ALL BE
PREVENTIVE PARTNERS IN THIS WORK
TOGETHER. AS SAM HAS MENTIONED
I'M JAY WILSON AND FOUNDING
PRESS CEO OF [INDISCERNIBLE]
MOMS AND WE DO WORK AROUND
CREATING MORE OPPORTUNITIES FOR
VISIBILITY FOR MOMS AND WOMEN
AND BIRTHING PEOPLE TO FIND
RESOURCES THEY NEED TO BECOME
BETTER VERSIONS OF THEMSELVES
AND OUTSIDE OF MY ORGANIZATION
MY DRAW TO THIS WORK ACTUALLY
CAME THROUGH MY PERSONAL
EXPERIENCE WITH LOSS. MY SECOND
PREGNANCY WAS A STILLBIRTH AT 22
WEEKS.
MY DAUGHTER NAEMA RENÉ WAS
STILLBORN DUE TO PLACENTAL
ABRUPGS THAT WAS CAUSED BY
SEVERE PREECOLLAPSE YA. WHILE I
HAD KNOWLEDGE ABOUT PREECOLLAPSE
YA PREGNANT PEOPLE BEFORE HER I
ACTUALLY HAD PREECOLLAPSE YA
BEFORE I'M MEDICAL PROFESSIONAL
AND NURSE IN HEALTH AND HOWEVER
DURING MY EXPERIENCE WITH MY
PREGNANCIES ALL OF THEM I WAS
CONSTANTLY SILENCED AND
DISMISSED AND CHAL EFFECTED
WHENEVER I ASKED QUESTIONS OR
WANTED MORE CLARITY AND WHENEVER
I ASKED FOR MORE RESOURCES SO I
COULD MAKE A BETTER MORE
INFORMED DECISION HOW TO MOVE
FORWARD WITH MY PREGNANCIES AND
MY HISTORY HAVING FOUR
PREGNANCIES AND TWO LOSSES IS
UNFORTUNATELY A VERY COMMON ONE
COMING TO BLACK WOMEN. ONE
THING I LEARNED THROUGH WORK --
IS MOM'S WOMAN AND BIRTHING
PEOPLE WHO LOOK LIKE ME WHO HAVE
EXPERIENCED THIS SAME DISPARITY
TIME AND TIME AGAIN AND ALONG
WITH MY OWN EXPERIENCE LEARNING
THAT WE OFTEN FEEL, WE CAN'T SAY
ANYTHING. NO ONE IS GOING TO
LISTEN. OR, WE JUST SHOULD NOT
SAY ANYTHING BECAUSE NOTHING
WILL CHANGE. SO, I'M GLAD TO BE
HERE AND TO BE PART OF THIS
WORK. I'M SO PROUD OF SAM FOR
CREATING THIS AWESOME SPACE FOR
US TO BRING VISIBILITY TO THIS.
ALSO, TO CREATE MORE
ACCOUNTABILITY IN SPACES THAT
CAN CREATE MACROLEVEL OF CHANGE.
TURNING IT BACK OVER TO YOU,
SAM. THANKS AGAIN FOR SHARING
YOUR PLATFORM WITH ME.
>> THANK YOU JAYE AND FOR ALL
WORK YOU DO. CDC DATA SHOWS IF
WE SIMPLY CLOSE THE GAP BETWEEN
WHITE AND BLACK PARENTS WE WOULD
AVERT 4,000 STILLBIRTH DEATHS
EVERY YEAR IN THE COUNTRY 17%
OVERALL REDISCUSSION IN
STILLBIRTH THAT IS REALLY A
CRISIS AND DUE TO HISTORY OF
RACISM AND COLLECTIVE INABILITY
TO FACE DEATH AND GRIEF, IT IS A
UNIQUELY AMERICAN CRISIS.
IN CASE YOU WERE WONDERING THIS
GRAPHIC BEHIND ME IS NOT
ABSTRACT ART BUT ILLUSTRATION OF
THE DIRE STATE OF STILLBIRTH
PREVENTION IN THE UNITED STATES.
THIS GREEN FIGURE OVER MY
SHOULDER DEPICTS 2016 LANCET
DATA ON REDUCTION OF STILLBIRTH
FROM 49 HIGH INCOME COUNTRIES US
IS TINY LITTLE YELLOW BARK AT
BOTTOM RANKING DISMAL 4 EIGHTH
OUT OF 49 AND PINK PICTURE IS
METRIC -- THE US SHAMEFULLY
AGAIN IF YOU CAN SEE IT RANKS
183RD.
SINCE WORKING GROUP WAS
ANNOUNCED SEPTEMBER 12TH, 2022,
OVER 7200US BABIES HAVE BEEN
BORN STILL. IT DOESN'T HAVE TO
BE THIS WAY. RESEARCH FROM NIH
OWN STILLBIRTH COLLABORATIVE
RESEARCH NETWORK FOUNDED IN
201925% OF US STILLBIRTHS ARE
PREVENTABLE INCLUDING 47% AT
TERM. FROM ZAN INTERNATIONAL
PEERS SHOW THESE ESTIMATES ARE
CONSERVATIVE. STILLBIRTH IN
JAPAN DEFINING STILLBIRTH
BEGINNING OF 22 WEEKS WE WOULD
AVERT UP TO 72% OF STILLBIRTH
DATE. 7200 BABIES IS HARD TO
WRAP YOUR BRAIN AROUND. THESE
ARE TINY HEART WUNZ FOR EACH OF
THE CHILDREN AND WHITE HEARTS
ARE POTENTIALLY PREVENTABLE
DEATHS.
WE HAVE A SAYING IN THE
STILLBIRTH COMMUNITY, A LITTLE
LIFE NOT A LITTLE LOSS. BECAUSE
EACH OF THE HEARTS MIGHT BE
SMALL BUT ARE VALUED BEYOND
MEASURE.
WE MUST NEVER LOSE SIGHT OF THE
FACT WHAT IS AT STAKE HERE IS
LIVES. MY STILLBORN DAUGHTER
AND JAY'S DAUGHTER AND THOUSANDS
LIKE THEM THAT WILL DIE
PREVENTABLE DEATH EVERY YEAR IN
THE COUNTRY UNTIL WE DO
SOMETHING ABOUT IT CONSIDERED
STATISTICALLY RARE SHEER NUMBER
OF STILLBIRTHS IS STAGGERING AND
[INDISCERNIBLE] BROUGHT BY
DEATHS IS UNFATHOMABLE. NUMBERS
ALONE HAVE NOT BEEN ABLE TO
CREATE CHANGE. ONLY PEOPLE
CREATE CHANGE. DR. BIONKY AND
DR. JANE AND DR. READY ALL ON
THE COUNCIL HAVE DEVOTED LIVES
HELPING OTHERS WIELD SCIENCE TO
DO GOOD AND TO BE HEALERS AND IN
THIS MOMENT YOU HAVE A CHOICE
AND OPPORTUNITY TO SEE
STILLBIRTH AS MORE THAN A DATA
COLLECTION PROBLEM AND AFFIRM IT
AS A PUBLIC HEALTH CRISIS IT IS.
WE IMPLORE YOU TO USE YOUR VOICE
AND PRIVILEGE TO WRITE THIS
WRONG TO END PREVENTABLE
STILLBIRTH IF YOU DON'T SPEAK
FOR US AND OUR CHILDREN I DON'T
KNOW WHO WILL. THANK YOU.
>> THANK YOU SAMANTHA. WE
APPRECIATE YOUR COMMENTS. THANK
YOU ALSO TO JAYE FOR YOURS.
MOVING TO MARGORIE VEIL, PLEASE.
REMINDER YOU HAVE THREE MINUTES
TO SPEAK, PLEASE.
MA HOG ANY, IS MARJORIE
AVAILABLE?
>> DOESN'T LOOK LIKE WE HAVE HER
ONLINE TODAY.
>> OKAY. LET ME ASK AND I WILL
KEEP THIS AS A PLACEHOLDER IS
TAMEKA ISAACS ON, PLEASE.
>> YES, MA'AM.
>> ALL RIGHT. TAMEKA, IF I CAN
ASK YOU TO GO NEXT I WOULD I
HAVE MUCH APPRECIATE IT.
>> SURE THING.
>> WE ARE GIVING YOU 5 MINUTES.
>> THANKS SO MUCH. I'M TAMEKA
ISAAC EXECUTIVE DIRECTOR OF
JAYS'S JOURNEY A NON-PROFIT MY
HUSBAND AND I STARTED IN TWENTD
19 TO ADDRESS DISPARITIES OF
MATERNAL AND INFANT HEALTH AND
DON'T WANT TO TALK MUCH ABOUT
THE ORGANIZATION AS MUCH AS I
WANT TO TALK ABOUT JAYS. I
BECAME PREGNANT WITH JAYS
NOVEMBER 27 TAENAT AGE OF 40 AND
TOLD I WAS HIGH RISK OF
PREECOLLAPSE YA. WE TRIED FOR
OVER A YEAR AND BEYOND EXCITE
TODAY WELCOME HIM TO OUR LIFE
AND THROUGHOUT THE COURSE OF MY
PREGNANCY WHICH WAS LIKE I SAID
DOCUMENTED AS HIGH RISK I WAS
GIVEN ZERO URINE TESTS AND ONE
BLOOD TEST ON FIRST DAY OF THIRD
TRIMESTER MAY 14TH 2018 JAYS WAS
PRESENTED WITH INTRAUTERINE
GROWTH RESTRICTION AND AFTER
INCONCLUSIVE ULTRA SOUND WAS
PERFORMED NO ADDITIONAL TESTING
WAS DONE AND MAY 10TH JAYS
FAILED A NONSTRESS TEST AND
AFTER ANOTHER ULTRASOUND
[INDISCERNIBLE] THE CAUSE OF THE
IUGR WAS NEVER DETERMINED OR
MENTIONED AND IN JUST 4 DAYS A
LITTLE OVER -- I WAS A LITTLE
OVER 35 WEEKS AT THIS POINT AND
ABOUT TWO WEEKS BEFORE I WAS
PLANNED TO BE INDUCED I WOKE UP
VOMITING IN THE MIDDLE OF THE
NIGHT AND WAS RUSHED TO THE
HOSPITAL AND LATER TOLD
EMOTIONLESSLY BY THE HOSPITAL
STAFF THAT JAYS HAD PASSED AWAY.
[INDISCERNIBLE] DROM THAT COULD
HAVE BEEN DIAGNOSED THROUGH
URIN
URINARY TEST. -- I CAN BARELY
REMEMBER I TOO ALMOST DIED THAT
DAY. DUE TO THE SEVERITY OF MY
HEALTH SYNDROME I WENT THROUGH 7
SURGERIES WITHIN 45 DAYS
DEVELOPING INFECTIONS THAT
FORCED ME TO MISS JAYS'S
FUNERAL. ONE SIMPLE TEST COULD
HAVE SAVED JAYS'S LIFE
UNFORTUNATELY ACCORDING TO ACOB
URINE PROTEIN TESTING IS NO
LONGER CONSIDERED A BEST
PRACTICE FOR REASONS THAT
INCLUDE AND I QUOTE HEALTH CARE
STAFF WOULD ALSO BENEFIT FROM
ELIMINATING ROUTINE URINE DIP
STICK TESTINGS. NURSES SPEND
NOTABLE AMOUNT OF TIME
THROUGHOUT DAY COLLECTING URINE
SAMPLES SCREENING FOR PROTEIN
AND DISPOSING OF WASTE. I'M
HERE TO TELL YOU THAT NO AMOUNT
OF TIME CAN CHANGE THE IMPACT
THAT JAYS'S PREVENT BABLE DEATH
HAS CHANGED MY ENTIRE FAMILY.
SAM AND JAY SPOKE WE NOT ALONE.
65 FAMILIES ARE EFFECTED BY
STILLBIRTH EACH YEAR.
THE TIME TO END PREVENTABLE
DEATHS IS NOW. I THANK YOU FOR
LETTING ME SHARE JAYS AND OUR
STORY. THANK YOU.
>> THANK YOU SO MUCH, TOMEKA.
WE APPRECIATE YOUR COMMENTS.
MARJORIE VEIL HAS JOINED US. IF
YOU ARE ABLE TO GO AHEAD WITH
YOUR COMMENTS, WE WILL OPEN THE
FLOOR TO YOU FOR THREE MINUTES.
>> THREE MINUTES. THANKS SO
MUCH. I APPRECIATE THE
OPPORTUNITY TO BE ABLE TO SPEAK.
I'M MARJORIE VEIL AND CURRENTLY
LIVE IN BROOKLYN, NEW YORK. MY
STORY UNFORTUNATELY BEGAN OR WAS
18 YEARS AGO.
IT IS SAD FOR ME THAT TO THIS
DAY WE ARE STILL HAVING THE SAME
CONVERSATIONS OVER AND OVER AND
OVER AGAIN.
WHEN 18 YEARS AGO WHEN WE SHOULD
HAVE BEEN EMBARKING ON ONE OF
THE GREATEST TIMES OF OUR LIVES
BECOMING PARENTS FOR THE FIRST
TIME, SOMETHING SO WONDERFUL
BECAME VERY, VERY TRAGIC. I
WANTED TO GIVE BIRTH AT A
BIRTHING CENTER IN A HOSPITAL IN
MANHATTAN.
IT WENT FROM BAD TO WORSE. ONE
OF THE REASONS WHY IS I WASN'T
LISTENED TO. NO ONE WAS
LISTENING TO ME.
NO ONE WAS HEARING ME WHEN I
SAID THAT I NEEDED SUPPORT AND I
NEEDED HELP. AND IT SADLY HAD
TO TAKE A TURN FOR THE WORST FOR
EVERYONE TO BE LIKE, OH, MY
GOSH. WE ARE SO SORRY. SORRY
IS A LITTLE BIT TOO LATE.
AND WITH US, IT TURNS OUT THAT
OUR SON DIED BECAUSE OF
VELEMENTOS CORD INSERTION AND
SOMETHING THAT COULD BE DETECTED
WITH EXTRA CLOSE-UP WITH A
SONOGRAM.
BECAUSE IT IS NOT A PART OF
STANDARD OF CARE, IT WASN'T
DONE.
SO, THEREFORE, A SIMPLE
C-SECTION ALTHOUGH MOST WOMEN
DON'T WANT C-SECTION BUT IT
COULD HAVE PREVENTED THAT.
HONESTLY, I HAD NEVER HEARD OF
THAT CONDITION UNTIL OUR SON
ALEXAY LONDON VAIL PASSED AWAY.
THEREFORE, MY CHARGE AND HOPE IS
THAT WE MAKE STANDARD OF CARE
EXTRA SONOGRAMS TO BE ABLE TO
FIND THESE THINGS AND ALSO TO
FIND -- TO TRACK THROUGH DATA
HOW MANY PREGNANCIES ARE OR HAVE
HAD DEVELOP EMENTOUS INCERTIFY
SHA TO BE ABLE TO PREVENT IT.
THAT IS MY CHARGE FOR YOU ALL.
>> THANK YOU SO MUCH, MARGE.
THANK YOU. SADLY, I'M DOING TOO
MANY BUTTONS OVER HERE. I
APOLOGIZE IF I'M A LITTLE
HESITANT ON THIS BUT THANKS FOR
SHARING YOUR STORY AND YOUR
CHARGE. IF WE CAN GO TO
CHRISTIAN ORTIZ. IS CHRISTIAN
ON THE LINE?
>> I'M HERE. I HAVE A VALENTINA
SHIRT. OKAY. I WILL KEEP --
>> WE GIVE YOU THREE MINUTES.
THANK YOU.
>> THIS IS A LOT TO UNPACK. I'M
REALLY SORRY TO HEAR ALL OF THE
STORIES.
THIS IS VERY SAD. I WILL KEEP
MY REMARKS BRIEF AND WILL KEEP
MY REMARKS BRIEF AND FROM NEW
YORK CITY AND MY PARTNER
STILLBIRTHED AT TERM LAST
CHRISTMAS AND AMERICAN COLLEGE
OF OBSTETRICS PUBLISHED A PAPER
FOUR YEARS AGO 50 PRSZ OF
STILLBIRTHS ARE PREVENTABLE.
MINE WAS PREVENTABLE. I KNOW
THIS I HAVE CLINICAL REPORTS
FROM EXPERT OBS AND AN AUTOPSY
THIS SERVICE WAS NOT OFFERED TO
ME AND WE PAID THOUSANDS FOR
INDEPENDENT EXPERTS TO LOOK AT
CRYSTAL'S MEDICAL RECORDS TO GET
TO THE BOTTOM OF WHAT HAPPENED
TO MY DAUGHTER TO GAIN CLOSURE
AND THAT VALENTINA'S STUDY COULD
BE USED FOR PREVENTIVE PURPOSES.
[INDISCERNIBLE] MANY PARENTS
DON'T. STILLBIRTH
DISPROPORTIONATELY EFFECTS
PARENTS OF LOW SOCIOECONOMIC
STATUS MANY OF THESE DEATHS ARE
MISIDENTIFIED BECAUSE OF SOURCE
OF OB'S OPINION IN MANY CASE
COULD BE BIAS AND NO THE IN THE
PRESENT SOURCE OF TRUTH AND KNOW
NIH ONCE HAD A GRANT COVERING
PATHOLOGY FOR STILLBIRTHS WHEN
IT WAS OFFERED 70% OF
STILLBIRTHS IN US GOT INDEPEND
YENLT AUTOPSIES AND STILLBIRTH
RATE PER CAPITIA DROPPED WHEN
THAT GRANT EXPIRE PERCENTAGE OF
AUTOPSIES DROPPED TO 30% AND
STILLBIRTHS [INDISCERNIBLE]. IT
IS DIFFICULT FOR RESEARCH
DEVELOPMENT TO GAIN
UNDERSTANDING HOW TO PREVENT
SOMETHING IF THERE IS NO CLEAN
DATA TO DISCERN. THE BODIES ARE
NOT THE PROBLEM. THERE ARE
PLENTY OF BODIES. 22,000 BODIES
A YEAR MORE OR LESS DESPITE US
FERTILITY RATE AT 40 YEAR LOW TO
RESEARCH. THE ISSUE IS THERE IS
NO FUNDING FOR SAID RESEARCH AND
EMPIRICAL EVIDENCE SUGGESTS WHEN
MONEY IS GEARED TOWARDS RESEARCH
AND DEVELOPMENT PREVENTABLE
STILLBIRTHS TREND DOWN IN THE
UNITED STATES.
THAT IS ALL I HAVE TO SAY.
>> CHRISTIAN, THANKS SO MUCH AND
THANKS FOR GIVING US ALSO SUCH A
POIGNANT STORY.
SO, IF I CAN, I WILL BE MOVING
TO SABRINA. I HOPE I'M SAYING
YOUR NAME CORRECTLY. IF NOT
PLEASE CORRECT ME WHEN I
INTRODUCE YOU. SABRINA TATE
WILL JOIN US. MAHOGANY, IS
SABRINA AVAILABLE?
>> I DO NOT SEE SABRINA ON.
[INDISCERNIBLE] SABRINA IS ON.
I THINK SABRINA IS ON.
>> GREAT. SABRINA, IF YOU CAN
COME OFF MUTE, I WILL YIELD TO
YOU FOR THREE MINUTES.
PLEASE IF IT IS SABERNA, I
APOLOGIZE.
>> [INDISCERNIBLE].
>> OKAY.
>> SHE MIGHT BE HAVING AUDIO
ISSUES POSSIBLY. SHE IS NO
LONGER ON.
>> OKAY. SO, MAY I ASK IF
IVELKA. PLEASE, AGAIN, ACCEPT
MY APOLOGIES ON PRONUNCIATION OF
NAME AND CORRECT ME, PLEASE.
MAGDALENA REYES, IF YOU ARE
AVAILABLE, WE WOULD LOVE TO OPEN
THE FLOOR TO YOU.
>> THANK YOU SO MUCH. I AM
AVAILABLE. CAN YOU HEAR ME?
>> THANK YOU. YES. WE CAN.
PLEASE BEGIN.
>> OKAY. HI. MY NAME IS
MAGDALENA REYES A NEW YORK
NATIVE BORN IN THE BRONX AND
TRAUMA INFORMED FULL SPECTRUM
BIRTH AND DEATH DOULA AND BRAIN
SPOTTING PRACTITIONER AND NEW
YORK AMBASSADOR FOR COUNT THE
KICKS. TRAUMA INFORMED BIRTH
DOULA CHILD BIRTH EDUCATOR AND
NEW YORK AMBASSADOR FOR COUNT
THE KICKS I'M PRESENT IN THE
COMMUNITY AND GIVE INFORMATION
TO SUPPORT AND INFORMATION TO
EMM
EMPOWER PEOPLE AND SUPPORT THAT
FAMILIES ARE NO THE ALONE IN
THIS BEAUTIFUL PROCESS OF BIRTH
AND LET THEM KNOW STAGES AND
WHAT A DOULA IS AND EQUIP THEM
WITH EVIDENCE BASED APP CALLED
COUNT THE KICKS THIS APP WAS
CREATED LIKE I SAID EVIDENCE
BASED RESEARCH DEMONSTRATING
REDUCTION IN STILLBIRTH BY
TEACHING PREGNANT WOMEN HOW TO
MONITOR FETAL MOVEMENT DURING
THE 3RD TRIMESTER OF PREGNANCY
DOING KICK COUNTS DISPLAYING IT
ON DAILY BASIS RECORDING BABY'S
MOVEMENT AND TRACKS CHANGES OVER
TIME AND REMINDS THEM TO COUNT
BABY'S KINGS EVERY DAY AND PRINT
OUT A REPORT TO GIVE THEIR
DOCTORS HAVING THIS INFORMATION
AND SUPPORT BRINGS EASE TO
PARENTS. WE KNOW DURING A
PREGNANCY CERTAIN ANXIETIES
ARISE IN BOTH PARENTS WHICH IS
COMMON, YOU KNOW?
AND TO NATAL ANXIETY PARENTS
FEEL ANXIOUS ABOUT BABY'S
WELFARE AND SEEK FREQUENT
REASSURANCE IS MY BABY HEALTHY
AND DEVELOPING NORMALLY AND
MOVING AND TOOLS LIKE COUNT THE
KICKS AND HAVING A DOULA HELP
PARENTS HAVE EASE.
HOWEVER, WHEN THERE IS A LOSS, I
HAVE TO PUT ON MY DEATH DOULA
HAT AND BRAINSPOTING
PRACTITIONER HAT. IT SEEMS IN A
SPACE LIKE THIS, PEOPLE QUICKLY
FORGET WHAT TO SAY, WHAT TO DO,
AND TO UNDERSTAND THAT IT IS A
TRAUMATIC EVENT.
IT IS NECESSARY TO RECOGNIZE
PERINATAL LOSS SUCH AS
STILLBIRTH AS A TRAUMATIC EVENT.
ALL OF US SEE THAT AS
PROFESSIONALS WE KNOW THAT
TRAUMA CHANGES THE BRAIN. WE
WOND ERR WHAT IS GOING ON WITH
THESE PARENTS AND HOW ARE THEY
FEELING AND I CAN SHARE WITH YOU
A LITTLE BIT FROM THE CLIENT'S
THAT COME TO HAVE SERVICES WITH
ME. THEY FEEL STUCK. THEY HAVE
DIFFICULTIES KNOWING HOW TO MOVE
ON FOLLOWING A LOSS AND MANY
TIMES MORE OFTEN THAN NOT, GRIEF
IS EMBODIED FOR YEARS.
STILLBIRTH IS TRAUMATIC AND I
HAVE TO SAY IT AGAIN THAT
STILLBIRTH IS A TRAUMATIC EVENT
AND SHOULD BE TREATED JUST LIKE
ANY OTHER TRAUMA. WE NEED TO
GIVE FULL SUPPORT TO PARENTS AND
NEED TO BE THERE WITH THEM. IT
IS IMPORTANT THAT WE ACKNOWLEDGE
THEIR EMOTIONAL TRAUMA
IMMEDIATELY DURING AND IN THE
YEARS FOLLOWING PERINATAL LOSS.
WHEN WE SIT HERE AND THINK ABOUT
HOW TRAUMATIC THE LOSS OF A
CHILD IS, IT IS THE LOSS OF A
LOVED ONE AND BABY AND THIS
TRAUMATIC EVENT AFFECTS BLACK
WOMEN THE MOST, 1 IN 96 OF THEIR
BIRTHS ENDS IN STILLBIRTH AND
DECADES AND DECADES OF RESEARCH
INDICATE THAT THIS SERIOUS US
PUBLIC HEALTH PROBLEM INVOLVES
STRUCTURAL RACISM. IT HAS A
NEGATIVE EFFECT ON MINDS AND
BODIES OF ALL RACIAL GROUPS,
YES.
BUT ESPECIALLY BLACK WOMEN AND
HISPANIC WOMEN LIKE MYSELF COME
IN A STRONG SECOND COMPARED TO
--
>> THANK YOU.
>> DOMINANT CULTURE, FOLKS.
PLEASE HELP US STOP THESE
PREVENTABLE STILLBIRTHS. THANK
YOU. WITH THAT I YIELD.
>> THANK YOU SO MUCH MRS. REYES,
I APPRECIATE.
>> YOU ARE MUTED.
>> THAT DOESN'T HELP. DOES IT?
>> SABRINA DID COME BACK.
>> OKAY.
>> I SENT HER A MESSAGE AND I'M
TRYING TO SEE IF SHE IS ABLE TO
-- SHE IS NOT IN THE COUNTRY
RIGHT NOW AND BELIEVE THAT COULD
BE THE ISSUE.
>> OKAY.
>> SABRINA, IF YOU ARE ABLE TO
MUTE.
>> I APOLOGIZE. TECHNOLOGY IS
NOT ALWAYS SEAMLESS. PLEASE
BEAR WITH US. MAHOGANY, LET'S
SEE IF WE CAN GET SABRINA TO
MESSAGE AND SEE AND I WILL PAUSE
AFTER THE NEXT PRESENTER IF THAT
IS POSSIBLE?
>> YES. I WILL ASK HER TO DIAL
IN.
>> THANK YOU SO MUCH.
SO, I WILL NOW TURN TO CATHERINE
HYDE HENSLEY. I BELIEVE I SEE
YOU ON AND WILL YIELD TO YOU FOR
THREE MINUTES.
>> THANK YOU. IN NOVEMBER 2006
WHILE MY COMMUNITY CELEBRATED
THE FEAST OF ALL SAINTS I
LABORED AND DELIVERED MY
STILLBORN BABY. HELEN WAS 7
POUNDS, 6 OUNCES AND 38 WEEKS OF
BEAUTIFUL BABY. WE WERE THREE
DAYS AWAY FROM OUR SCHEDULED
C-SECTION.
DAVE AND I LEFT THE HOSPITAL
WITH EMPTY ARMS. WE RECEIVED A
CERTIFICATE OF FETAL DEMISE IN
THE MAILBOX. AT MY 6-WEEK
FOLLOW UP MY NURSE ASKED WITH
JOY SO HOW IS THE NEW BABY
DOING? SHE HAD NOT READ MY
CHART. AFTER THE FUNERAL, THE
COMMUNITY RETURNED TO THEIR
NORMAL LIFE WHILE WE FACED
STIGMA, ISOLATION, AND FEELINGS
OF FAILURE MARKED BY STILLBIRTH.
I RECEIVED FALSE EDUCATION
REGARDING MY MILK SUPPLY AND I
WAS ENGORGED FOR THREE WEEKS.
I HAD SEVERE POSTPARTUM
DEPRESSION AND PTSD AND
STRUGGLED TO CARE FOR MY TWO
CHILDREN. I LOOKED FOR MENTAL
HEALTH SUPPORT AND THERE WAS
LITTLE TO BE FOUND.
NO ONE CONSIDERED MY MENTAL
HEALTH NOT EVEN A PHQ9 OR
EDDENBURG WAS DONE. STILLBIRTH
BLINDSIDED US. AS WE LEANED I
LEARNED ABOUT THE FREQUENCY, THE
PREVALENCE, AND THE PAINFUL
STIGMA. LOSING HELEN IMPACTED
OUR MARRIAGE, OUR FINANCES,
CAREERS, AND ESPECIALLY OUR
PARENTING.
I AM A BEREAVED MOTHER, 2006, A
BEREAVED SISTER 2016 AND
BEREAVED DAUGHTER 2018. I LEAN
IN TO THE GRIEF. IT FUELS MY
PASSION FOR MATERNAL INFANT
THERAPY AS A LICENSED CLINICAL
MENTAL HEALTH COUNSELOR. I ASK
YOU TO CONSIDER THAT BLACK'S
2020 RESEARCH REPORTS THAT STIL
BIRTH SETS IN MOTION A COMPLEX
TRAUMA RESPONSE WITH
IMPLICATIONS FOR FUTURE
CHILDBEARING, PARENTING AND
OTHER CHILDREN AND INTIMATE
RELATIONSHIPS AND PHYSICAL
EMOTIONAL HEALTH AND REMIND YOU
JOE AN'S 2010 RESEARCH DESCRIBES
TRAUMATIZING ASPECTS OF
STILLBIRTH THAT INCREASES A
WOMAN'S RISK FOR ADVERSE LONG
TERM SOCIAL AND PSYCHOLOGICAL
OUTCOMES AND LET'S ASK OURSELVES
WHAT WE CAN DO TO REDUCE
STILLBIRTH AND WHAT HAS WORKED
WELL IN OUR GLOBAL COMMUNITY AND
I ASK YOU TO LISTEN TO THE
FAMILIES IMPACTED BY STILLBIRTH
AS WE AIM TO BE PART OF THE
PARADIGM SHIFT WE NEED TO MAKE
SYSTEMATIC CHANGES THROUGH
PREVENTION USING SAFER BABY
BUNDLES LEANING INTO THE
RESEARCH STILLBIRTH CENTERS FOR
RESEARCH EXCELLENCE BECAUSE ONLY
THROUGH EDUCATION AWARENESS
CAMPAIGNS AND PREVENTION CAN WE
REDUCE THE DISPARITIES. THANK
YOU.
>> CATHERINE, THANK YOU SO MUCH.
VERY MUCH APPRECIATE YOUR
COMMENT. I JUST WANT TO PAUSE
AND ALSO TO SAY THAT I WANT TO
THANK ALL OF YOU FOR SHARING
YOUR STORIES AND SHARING STORIES
OF YOUR BABIES AND FAMILIES SO
PUBLICLY AND THINK IT IS SO VERY
POWERFUL AND VERY A REALLY
MEANINGFUL WAY FOR US TO BE IN
TOUCH WITH MUCH WHAT WE HEARD
OVER THE COURSE OF THE RESEARCH
DISCUSSION AND AS WE HEARD FROM
FAMILIES THROUGHOUT IT WAS VERY
MUCH TOP OF MIND FOR US. I DO
JUST WANT TO TAKE A MOMENT TO BE
GRATEFUL RIGHT NOW. I WANT TO
THEN CHECK BACK IN TO SEE IF ONE
OF THE PARTICIPANTS HAS BEEN
ABLE TO JOIN. MAHOGANY, YES?
IF JUST SAY WE ARE WORKING ON
IT. WE CAN -- WE WILL MOVE TO
THE NEXT PRESENTER AND I
APPRECIATE YOUR EFFORTS.
IS CHRISTINE CHANG WITH US?
>> YES.
>> I WOULD LIKE TO INVITE
CHRISTINE TO SPEAK FOR THE NEXT
SPEAKER. CHRISTINE, THANK YOU
FOR JOINING US. I WILL YIELD TO
YOU FOR THREE MINUTES.
THANK YOU.
>> THANK YOU. HELLO. THANKS
FOR THE OPPORTUNITY TO SPEAK
TODAY I'M CHRISTINE CHANG AND A
HEALTH CARE PROFESSIONAL AND
HOLD MASTERS IN PUBLIC HEALTH
FROM COLLUMAR UNIVERSITY AND
SPEND MY PROFESSIONAL CAREER
LOOKING FOR WAYS TO IMPROVE THE
HEALTH CARE SYSTEM HOW
ELECTRONIC RECORDS CAN BE
IMPROVED AND TAKING PATIENT
ADVOCACY MODELS DR. FAUCI USED
-- CARRYING FOUR FULL TERM
PREGNANCIES AND BROUGHT THREE
HOME IT IS APPARENT TO ME TO
IMPROVE PREGNANCY OUTCOMES IS
NECESSARY AND PROFESSIONAL
BACKGROUND MEANT GOING INTO
FIRST PREG NANNY UNDERSTOOD
HEALTH CARE AND KNEW I NEED
TODAY ADVOCATE FOR MYSELF AND
KNEW HOW THE HEALTH SYSTEM
WORKED AND DID MY RESEARCH AFTER
A SEEMINGLY LOW RISK PREGNANCY
WAS TOLD MY BABY HAD NO HEART
BEAT. I BLACKED OUT AS I
HEMORRHAGED WHILE DELIVERING HER
PLACENTA. CAME TO ROOM WAS
SILENT AND HUSBAND BY MY SIDE
HOLDING OUR BABY GIRL IN HIS
ARMS WOULD HAVE PREFERRED TO
HAVE BABY IN NICU OR C-SECTION.
I WOULD HAVE PREFERRED IT WAS MY
LIFE RATHER THAN MY BABIES OVER
THE FOLLOWING WEEKS AND MONTHS
AS INITIAL SHOCK WORE OFF I HAD
SO MANY QUESTIONS HOW MANY
STILLBIRTHS OCCURRED AT 38 WEEKS
WHAT HAPPENED? SOME ANSWERS
CAME QUICKLY. CHANGE IN FETAL
MOVEMENT WAS A WARNING SIGN I
DIDN'T KNOW TO LOOK FOR BABY'S
MOVEMENTS CHANGED TWICE OVER
COURSE OF NUMBER OF DAYS NURSES
I SPOKE TO DIDN'T TAKE IT
SERIOUSLY AND MET MOMS ONLINE
AFTERWARDS -- OTHER ANSWERS FOR
ME TOOK MORE TIME. 5 YEARS
LATER I FOUND OUT MADISON HAD AN
EXTREMELY SMALL PLACENTA WASN'T
ABLE TO TAKE MATERNITY LEAVE
DIDN'T HAVE A BABY TO BOND WITH
WHEN I WENT BACK TO WORK I BURST
INTO TEARS EVERY TIME I SAW THE
WORD HOSPITAL. MY PTSD TURNED
INTO POSTPARTUM ANXIETY AFTER
BIRTH OF SUBSEQUENT LIVING
CHILDREN. I MENTALLY NOTED TIME
IT WAS IN CASE IT WAS LAST TIME
HE MIGHT BE ALIVE. MY QUESTIONS
STILL REMAINED DI HAVE A SMALL
PLACENTA WITH ALL MY PREGNANCIES
-- MATERNAL AND CHILD HEALTH
INCLUDES STILLBIRTH THAT OCCURS
MORE THAN SIDS AND MORE THAN
MATERNAL DEATHS.
WE NEED BETTER DATA COLLECTION
AND RESEARCH AND NEED TO
CONTINUE TO LISTEN LIKE YOU ARE
TODAY TO PATIENTS WHO EXPERIENCE
THIS LOSS EVEN IF UNCOMFORTABLE
AND SET A GOAL OF PRODUCING
STILLBIRTH RATES 10 TO 20% IN 5
TO 10 YEARS PICK YOUR NUMBER AND
EDUCATE PATIENT AND PROVIDERS
EVERY NIGHT MY KIDS SAY
GOODNIGHT TO EACH OTHER AND TO
THEIR SISTER MADISON. TELLING
YOU THIS SO NOBODY ELSE HAS TO
EXPERIENCE A PREVENTABLE
STILLBIRTH. THANK YOU.
>> THANK YOU FOR YOUR STORY. WE
APPRECIATE YOU SHARING IT.
NOW, WHAT I WOULD LIKE TO DO
MAHOGANY, I WILL JUST IF YOU ARE
STILL WORKING ON IT, YOU CAN SAY
YES.
>> YES.
>> OKAY.
>> WHAT I WILL DO IS IF MICHELLE
HARRIS AND AGAIN CORRECT ME IF I
SAY NAMES CORRECTLY WHO IS
REPRESENTING ELIJAH'S PURPOSE
AND ORGANIZATION WOULD BE
AVAILABLE, WE CAN BEGIN.
>> HI. HELLO. CAN EVERYONE
HEAR ME?
MICHELLE HAD A WORK OBLIGATION
AND COULDN'T MAKE IT AND ASKED
ME TO SPEAK ON HER BEHALF IN
ELIJAH'S WAY.
>> OKAY. WHO ARE WE SPEAKING
WITH?
>> KENYA KIRKMAN.
>> OKAY, KENYA. OKAY. GO
AHEAD.
>> OKAY. THANKS SO MUCH.
>> THANK YOU.
>> SO, YES. HI. I'M KENYA
KIRKMAN AND I'M SPEAKING ON
MICHELLE AND HER ORGANIZATION
ELIJAH'S PURPOSE AN ORGANIZATION
PROVIDING RESOURCES AND SUPPORT
TO FAMILIES SUFFERING FROM
PREGNANCY INFANT LOSS. 2014
MICHELLE WAS PREGNANT WITH TWINS
AND -- SHE WASN'T ABLE TO GET
APPOINTMENT UNTIL 28 WEEKS AT
THAT APPOINTMENT SHE WAS
INFORMED ELIJAH HAD PASSED AWAY
3 WEEKS PRIOR PLACED ON BED REST
DUE TO MANY COMPLICATIONS DUE TO
LACK OF PROPER PRENATAL CARE
ALICIA HAD TO GO THREE WEEKS
WITH DECREASED BROTHER ELIJAH IN
THE WOMB AND FINANCIAL COST OF
BURYING ELIJAH WAS A BURDEN AT
THE TIME. 2020 ELIJAH'S PURPOSE
WAS BORN IN WHICH IT IS AN
ORGANIZATION NOW THAT PROVIDES
FINANCIAL SUPPORT TO FAMILIES
EXPERIENCING PREGNANCY AND
INFANT LOSS. SIMILAR TO
MICHELLE I EXPERIENCED HORRIBLE
BIRTHING EXPERIENCE I WAS
PREGNANT WITH TWIN BOYS THEY ARE
NOT HERE PHYSICALLY I DIDN'T
HAVE HAPPY ENDING I DREAMED OF
AND HOPED FOR AND I WENT TO
EVERY DOCTOR'S APPOINTMENT
FOLLOWED EVERY DIRECTIVE AND
DECIDED NO THE TO WORK I WANTED
A SMOOTH PREGNANCY NOTHING
PREPARED ME FOR AUGUST 19TH 2019
TREATMENT I ENDURED IN INITIAL
HOSPITAL WAS UNPLEASANT. I
DIDN'T FEEL THE SITUATION
MATTERED TO THEM OR WHAT I WAS
SAYING WAS BEING TAKEN SERIOUS I
FELT UNHEARD AND MISGUIDED LED
ME TO SWITCH HOSPITALS IN MIDST
OF MY PREG NANNY BY THAT TIME MY
TWINS WERE BORN STILL AND TOLD
CAUSE WAS INCOMPETENT CERVIX
THAT IMPACTS BLACK AND BROWN
MOTHERS AS ALARMING RATES.
IT HAS IMPACTED ME AND MY FAMILY
EMOTIONALLY MORE THAN ANYTHING
TO THE POINT I HONESTLY AM
TERRIFIED TO CONCEIVE OR EVEN
THINK ABOUT STARTING A FAMILY.
EXCUSE ME.
AS OF TODAY, IN NUMEROUS WAYS
AND PROBABLY SHARED IN
STATISTICWISE 1 IN 107 PREGN
PREGNANCIES IN US END IN
STILLBIRTH EQUIVALENT TO THREE
KINDERGARTEN CLASSES OR SCHOOL
BUS FULL OF CHILDREN EVERY DAY
OR IN AN AIRPLANE EVERY WEEK
MATERNAL MORBIDITY
[INDISCERNIBLE] TO ANY OTHER
RATES OF WOMEN. BLACK WOMEN AND
BLACK FAMILIES ARE SUFFERING.
30% OF US STILLBIRTHS EVEN
THOUGH THEY COUNT FOR 2% OF THE
POPULATION. NO WAY IN 2019 WITH
MY TWO SISTERS AND I ALL BEING
PREGNANT IN THE SAME YEAR WUB OF
THE THREE PREGNANCIES ENDED
UNFAVORABLY I HAVE MANY THOUGHTS
WHETHER THIS IS BECAUSE I HAD MY
PREGNANCY IN NEW YORK AND THEY
HAD THEM IN STATE OF DMROR DAH.
IN NEW YORK 900 STILLBIRTHS ON
AVERAGE EACH YEAR IN NEW YORK
CITY SPECIFICALLY AND THIS RATE
OF 1 IN -- THIS IS A RATE OF 1
IN 125 PREGNANCIES THAT IS 33%
WORSE THAN NATIONAL US AND
BREAKDOWN FOR NEW YORK CITY
FETAL DEATHS DOESN'T INCLUDE
[INDISCERNIBLE] SO WAS NOT
AVAILABLE. NEEDLESS TO SAY I
WOULD LIKE TO SEE CHANGE IN
AFTER CARE FOR STILLBIRTH
PARENTS ESPECIALLY FOR
STILLBIRTH PARENTS OF COLOR.
OFTEN TIMES I DON'T WANT TO SAY
A COMMUNITY BUT OFTEN TIMES A
PLACE OF LONELINESS THAT HAPPENS
TO USING AS ALARMING RATES AND
THERE IS AN EXPECTATION OF JUST
MOVE ON.
JUST THE POST PREGNANCY VISITS
ARE SUB-PAR AND TRYING TO GET
ANSWERS WHILE GRIEVING AND
SHOULD BE AFTER CARE TEAM FOR
STILLBIRTH PARENTS AND BETTER
STANDARD AND PROTOCOL SO PARENTS
ARE PROVIDED WITH RESOURCES TO
MOVE FORWARD AND WHAT CAN BE
DONE MOVING FORWARD FOR
PREVENTION. I THANK YOU FOR
YOUR TIME AND OPPORTUNITY TO
SPEAK ON BEHALF OF MY BOYS AIDEN
AND CARTER.
>> THANK YOU FOR SPEAKING ON
BEHALF OF ELIJAH'S WAY AND
APPRECIATE YOU ALL AND YOU
WILLING TO STEP IN. SABRINA
TATE HAS BEEN ABLE TO GET AUDIO
AVAILABLE SO THINK IF WE CAN GET
SABRINA TO JOIN US.
>> HI. CAN YOU HEAR ME?
>> WE CAN.
>> P PERFECT.
>> YOU SAID IT RIGHT THE FIRST
TIME. SABRINA. I'M SABRINA
TATE. IT IS JUST SPELLED
DIFFERENT.
>> ALL RIGHT. THANK YOU,
SABRINA. GO AHEAD.
>> NO PROBLEM. SORRY FOR THE
CONNECTION ISSUE I'M ON VACATION
WITH MY FAMILY I'M SABRINA TATE
AND FROM NEW JERSEY AND
REPRESENT MY DAUGHTER LILY WHO
WAS BORN STILLBORN IN 2020.
MY PREGNANCY WAS A NORMAL
PREGNANCY.
AFTER MY ROUTINE 20 WEEK CHECKUP
MY CERVIX OPENED FOR ME DOCTORS
DIDN'T DO DUE DILIGENCE THEY
NEEDED TO DO IN ORDER TO PREVENT
HER OR MY CERVIX OPENING
INITIALLY 80% OF STILLBIRTHS
TAKING PLACE IN PREGNANCIES WITH
NO KNOWN RISK FACTORS PRESENTED
IN MY CASE HEALTHY 40-WEEK
PREGNANCY AFTER GETTING PREGNANT
WITH MY DAUGHTER AND AFTER I
EXPERIENCED INCOMPETENT CERVIX
AND NEXT TIME WE CAN DO THIS OR
THIS VERSUS HAVING A ROUTINE
CHECK OF A CERVIX AT 13 WEEKS OR
WHATEVER THE REQUIREMENTS AFTER
YOU EXPERIENCED INCOMPETENT
CERVIX AND YOU KNOW FOR ME THERE
WAS NO REAL ANSWERS JUST THESE
THINGS JUST HAPPEN AND
INSENSITIVITY FROM DOCTORS
CAUSED ME TO END UP LEAVING THE
HOSPITAL AND GOING TO A
DIFFERENT HOSPITAL WHERE
[INDISCERNIBLE] THERE WASN'T
MUCH THEY COULD DO BY THAT
POINT. IT HAD GOTTEN TOO FAR
AND LOTS OF TIMES THESE
PREGNANCIES FALL THROUGH THE
CRACKS AND PREVIOUS PERSON SPOKE
WITH [INDISCERNIBLE] I'M AT THAT
POINT I'M FEARFUL. I KNOW THE
GOOD AND NOT SO GOOD THINGS THAT
HAPPEN WITH PREGNANCIES.
BECAUSE I'M MORESO NERVOUS FOR
THE CARE THAT I WOULD BE GETTING
BECAUSE I HAVE EXPERIENCED THIS
I KNOW IT COULD HAPPEN BUT WOULD
NEED SOMEONE THAT WOULD BE ABLE
TO REALLY PUT THAT TIME AND CARE
INTO MYSELF ONCE I DO BECOME
PREGNANT. LIKE I SAID, I
BELIEVE THAT IF THERE IS -- YOU
KNOW, SOMETHING PUT IN PLACE
WHERE EVERY -- REGARDLESS OF YOU
HAVING A HEALTHY CERVIX OR NOT
THAT SOMETHING IS IN PLACE TO
CHECK EVERYONE'S SERVICE
SHOULDN'T HAVE TO WAIT UNTIL
SOMEBODY EXPERIENCES LOSS TO
CHECK CERVIX. THAT IS WHAT I
HAVE TO SHARE AND THANK YOU
SAMANTHA FOR PUTTING THIS
TOGETHER AND THANK YOU FOR YOUR
TIME.
>> SABRINA, THANK YOU SO MUCH
AND WE VERY MUCH APPRECIATE YOUR
COMMENT.
NOW I WILL TURN TO ERICA BAILEY.
ERICA, ARE YOU AVAILABLE?
>> SHE HAS AN EMERGENCY. SHE IS
ACTUALLY NOT ABLE TO SPEAK
TODAY.
>> OKAY. THANK YOU FOR LETTING
ME KNOW THAT. I APPRECIATE IT.
I HOPE EVERYTHING IS OKAY.
WITH THAT THEN, I WILL ASK IF
CATHERINE COX HAS JOINED US.
>> I'M HERE.
>> CATHERINE, I WILL RECOGNIZE
YOU NOW FOR THREE MINUTES.
PLEASE PROCEED AND THANK YOU FOR
JOINING TODAY.
>> THANK YOU VERY MUCH. I'M
CATHERINE COX AND LIKE MANY LOSS
MOMS WAYS HIGH RISK PREGNANCY.
CONCEIVED SON THROUGH IVF38
YEARS OLD AND CONTROLLED
HYPERTENSION MY PREGNANCY WAS
PERFECT AND EVERY VISIT PASSED
FLYING COLORS TWOOND 8 WEEKS
WEEKLY NONSTRESS TEST ENDED WE
IS PERFECT 38 WEEKS GOT COVID
MILD ONE NIGHT HAD SPOTTING MILD
CONTRACTIONS DOCTORS FOUND BLOOD
CLOT IN CERVIX. I WAS KEPT IN
HOSPITAL FOR FIVE DAYS. FIVE
DAYS HE WAS PERFECT AND BLOOD
CLOT WASN'T MENTIONED AGAIN AND
NO TESTING DONE TO DETERMINE
WHAT CAUSED IT. CONTINUED NSTS
WEEKLY AND HAD GROWTH ULTRA
SOUNDS AND DOPPLARS AND -- AGAIN
I WAS SENT HOME BECAUSE
EVERYTHING WAS PERFECT. 33
WEEKS AND 6 DAYS NST GREAT
MOVEMENT AND PRACTICE BREATHING
ONLY MIELTD CONTRACTIONS SENT ME
HOME. LESS THAN 36 WEEKS LATER
P BABY WAS DEAD AND THEY SUSPECT
COVID WAS CAUSE.
LISTED CAUSE OF DEATH IS UNKNOWN
6 WEEKS POSTPARTUM FOLLOW UP OB
TESTED ME -- FEW WEEKS LATER I
WAS OFFICIALLY DIAGNOSED -- I AM
NOT HERE TO SUGGEST EVERY PERSON
CONSIDERING PREGNANCY BECAUSE OF
[INDISCERNIBLE] AVM PS DIAGNOSIS
IS NOT PREDICTIVE OF FETAL
DEATH. -- ONE OF OBS TOLD ME
AFTER SON'S DEATH 1 IN 9,000
REACTIVE -- DON'T KNOW WHERE SHE
GOT THAT STATISTIC BUT TELLS ME
SHE TRUSTED NST FOR HIGH RISK
PREGNANCIES LIKE MINE TO TELL ME
MY BABY IS IN TROUBLE. -- NST
IS NOT FULL PREDICTIVE VALUE AND
INDICATES FETAL BLOOD OXYGEN AT
TIME OF TEST AND SAME COULD BE
SAID FOR MANY PARENTS INCLUDING
SOME HERE TODAY WHY WASN'T MORE
TESTING DONE AND WHY DIDN'T I
HAVE WEEKLY DOPPLAR DONE. MY
SON WAS STILLBORN 5 MONTHS AND 6
DAYS AGO I HAVE BEEN LIVING IN A
VIRTUALLY CATATONIC STATE. I
DON'T SEE FRIENDS OR FAMILY AND
MOTHER-IN-LAW CRIES WHEN SHE
SEES ME.
MY HUSBAND AND I SPEND WEEKENDS
AT SON'S GRAVE HE IS ONLY CHILD
AND PURPOSE AND DON'T WANT TO
SPEND TIME ANYWHERE ELSE
STILLBIRTH DESTROYS LIVES AND
FAMILIES -- MY SON IS ONE OF
23,000 BABIES THAT DIED LAST
YEAR THAT IS THE AMOUNT OF
FAMILIES THAT WILL NEVER BE THE
SAME. -- KNOWLEDGE TO STOP MY
SON FROM DYING WITH WHAT I
BELIEVE IS A PREVENTABLE DEATH.
THANKS FOR YOUR TIME.
>> THANK YOU SO MUCH AND THANK
YOU FOR BEING HERE WHEN I KNOW
IT IS PROBABLY VERY DIFFICULT
FOR YOU TO PARTICIPATE GIVEN
WHAT YOU SHARED AND I ALSO WANT
TO ACKNOWLEDGE FOR EVERYONE ON
THE CALL THAT THE LOSS AND
TRAUMA YOU ARE SHARING IS -- IT
IS VERY DIFFICULT I KNOW FOR
MANY OF YOU. I JUST WANT TO
RECOGNIZE HOW VERY POWERFUL AND
MEANINGFUL THIS IS AND JUST HOW
GRATEFUL WE ARE FOR YOUR
WILLINGNESS. THANK YOU AGAIN.
CATHERINE, ALL THE BEST TO YOU
AND YOUR FAMILY.
ANGELICA KOVACH. NOT SURE IF
YOU HAVE BEEN ABLE TO JOIN US.
>> RIGHT HERE. DON'T KNOW IF
YOU CAN HEAR ME OKAY.
>> WE CAN HEAR YOU JUST FINE
ANGELICA.
>> THANK YOU. GOOD AFTERNOON.
I'M ANGELICA FROM BOISE, IDAHO.
THANKS FOR THE OPPORTUNITY TO
SPEAK TODAY. I'M MOTHER TO ONE
LIVING CHILD AND 2 ANGEL BABIES.
MY HUSBAND AND I LOST OUR SECOND
CHILD TO STILLBIRTH ON JUNE 1ST
OF 2020 AT 33 WEEKS AND 5 DAYS
GESTATION DUE TO SEVERAL DAYS OF
UMBILICAL CORD COMPRESSION AND
ANOXIA I WAS A HEALTH CARE
PROFESSIONAL WHO WAS COMPLETELY
AWARE THAT SOMETHING LIKE THIS
COULD HAPPEN DURING MY PREGNANCY
AND STILL FELT COMPLETELY
BLINDSIDED. HEART IS BROKEN AND
CONSTANTLY ASK MYSELF HOW I
DIDN'T KNOW THAT MY SON WAS
FIGHTING FOR HIS LIFE WHILE HE
STILL OCCUPIED MY OWN BODY.
THE NIGHT HE DIED WHEN I
REALIZED I HADN'T FELT HIM MOVE
ABOUT LUNCH TIME -- DELAYED CARE
FOR 4 HOURS USING WHAT I KNOW IS
OUTDATED [INDISCERNIBLE] FOR HIS
MOVEMENT AND KICKS IN TWO HOURS
I DIDN'T WANT TO GO INTO TRIAGE
RIGHT AWAY. I DIDN'T WANT TO BE
A BURDEN TO THE MEDICAL STAFF SO
OFTEN I HEARD DISPARAGING
COMMENTS FROM POSITION OF
NURSING STAFF ABOUT ANXIOUS
PARENTS SEEKING HELP WHEN
EVERYONE IS OKAY. BECAUSE OF
THAT I CONVINCED MYSELF MY
CONCERNS WERE ALL IN MY HEAD AND
WHEN I WENT INTO TRIAGE IN THE
WEE HOURS OF THE FOLLOWING
MORNING NURSE COULDN'T FIND
EZRA'S HEATS BEAT WITH DOPPLAR
AND TRYING TO FIND ANY
INDICATION OF MOVEMENT VIA
ULTRASOUND. EZRA HAD BEEN GONE
ALREADY FOR A COUPLE HOURS WHEN
HE DIED MY WORLD WAS TURNED
UPSIDE DOWN.
ADDING TO THAT THE FACT THAT AS
TIME HAS PASSED I HEARD FAR TOO
MANY STORIES THAT SOUND EERILY
SIMILAR COUNTLESS LOSS PARENTS
HAVE TOLD ME ALL THEY WANTED WAS
ONE PERSON TO VALIDATE THEIR
FEELINGS OF URGENCY AND
IMPENDING DOOM SOMEONE TO TELL
THEM IT IS OKAY TO GO TO THEIR
PROVIDER AND CHECK UP ON THEIR
BABY. I UNDERSTAND MYTHODICAL
AND BASED ON EVIDENCE FROM
RESEARCH I PLEAD WITH YOU TO
PLACE A STOP GAP MEASURE WHILE
WE WAIT FOR PENDING STUDIES TO
GIVE US FURTHER GUIDANCE AND ASK
THAT THREE FOLLOWING NONINVASIVE
PRACTICES BE CONSIDERED FOR
PREVENTION OF LOSSES LIKE MY
OWN. ONE, ASKING PARENTS TO
ESTABLISH WHAT NORMAL FETAL
MOVEMENT MEANS FOR THEIR BABY
USING TOOLS LIKE COUNTED THE
KICKS APP AND 2 REQUESTING
PRENATAL PROVIDERS ASK MORE THAN
JUST IS YOUR BABY MOVING WHEN
ASSESSING ADEQUACY OF FETAL
MOVEMENT AND 3 MODIFYING
PRENATAL EDUCATION TO ESTABLISH
THAT P HAD HEALTH CARE PROVIDERS
THERE BECAUSE OF AND FOR THE
PATIENTS EMPOWERING ALL
EXPECTING PARENTS TO USE MOM AND
DAD VOICES WHEN THEY HAVE A
CONCERN REGARDING THEIR BABY.
THANK YOU VERY MUCH.
>> THANK YOU ANGELICA SO MUCH
FOR SHARING YOUR STORY AND FOR
YOUR RECOMMENDATION.
IF WE CAN NOW, I WILL MOVE TO
CAMILA CASTOR. ARE YOU WITH US
TODAY?
>> YES. I'M HERE.
>> GREAT. CAMILA, I WILL YIELD
TO YOU FOR THREE MINUTES.
THANKS SO MUCH.
>> THANK YOU. I APPRECIATE THE
ABILITY TO SPEAK IN THIS SPACE.
I AM CAMILA AND LIVE IN TEXAS
AND HERE TODAY AND HAVE A UNIQUE
STORY LITTLE BACKGROUND THREE
MINUTES -- MY HUSBAND DECIDED TO
GIVE A FAMILY WHO HAD BEEN
STRUGGLING WITH INFERTILITY
THEIR WHOLE LIFE THE GIFT OF
HAVING THEIR FIRST CHILD. I
WENT THROUGH IVF AND WHO I ASKED
MY PROVIDER IF THERE IS RISK OF
IVF IF ANY ADVERSE OUTCOMES WITH
DOING IVF. LIKE EVERYONE ELSE
SAYS I BELIEVE I'M HERE TO PLEAD
YOU TO IMPLEMENT POLICIES TO
IMPLEMENT STANDARD OF CARE SO
THAT EVERYONE HAS THAT SAME
STANDARD OF CARE. AND OBS ARE
FORCED TO TREAT EVERY PREGNANCY
THE SAME AND HAVE TO DO THIS
CARE. I HAVE HAD THE SAME OB.
SHE IS A WONDERFUL OB AND
PRESIDENT OF MY HOSPITAL HERE IN
MY CITY AND PROVES TO YOU IT
DOESN'T COME FROM THE PROVIDER
THEMSELVES AND LOTS OF TIMES I
BELIEVE IT COMES FROM YEARS AND
YEARS OF WORKING AND BEING
TAUGHT IN A BROKEN SYSTEM. I
ASKED HER IS IVF MORE OF A RISK
SHE TOLD ME NO I LEARN THAT IVF
YOU ARE FOUR TIMES MORE AT RISK
FOR HAVING A STILLBIRTH WENT
THROUGH PREGNANCY BODY WENT WELL
ABLE TO GET OFF HORMONES. I HAD
EXTRA APPOINTMENTS AND SONOGRAMS
AND EVERY TIME I WAS REASSURED
EVERYTHING WAS PERFECT AND WITH
ME AND WITH THIS BABY AND SO AT
38 WEEKS I WENT TO THE DOCTOR
AND NOTICED I DIDN'T GAIN WEIGHT
THAT WEEK FROM 37 TO 38 AND
ASKED IF IT WAS ANYTHING NORMAL
SHE SAID IT COULD BE NORMAL I
LET IT GO FROM IN-BETWEEN THAT
38 WEEK TO 39 WEEK APPOINTMENT
THAT WAS MY SCHEDULED DELIVERY
DATE I WENT IN 5 DAYS BEFORE I
CALLED FOR REDUCED FETAL
MOVEMENT AND ASKED FOR SONOGRAM
AND TOLD ME I HAD SONOGRAMS IT
THAT INSURANCE WOULD COVER AND I
DIDN'T GET A SONOGRAM AND 30
SECONDS ON A DOPPLAR AND TOLD ME
EVERYTHING WAS OKAY. I WOULD BE
AT C -- SECTION IN 5 DAYS 3 DAYS
AFTER THAT PROJECTILE VOMITED
COULDN'T KEEP WATER DOWN. TOLD
THEM BABY IS NOT MOVING AS MUCH
VOMITING YOU WILL BE FINE
DELIVERED IN TWO DAYS SENT ME
SDOE FRAN PRESCRIPTION TOOK IT
HOPED FOR BEST IN TWO DAYS JULY
14TH 2021 I SHOWED UP WITH THE
BABY'S PARENTS HER GRANDPARENTS
MY PARENTS MY HUSBAND AND ONLY
FOUND OUT BABY HAD DIED I HAD TO
SIT IN A ROOM BY MYSELF NO ONE
WAS TRAINED ON WHAT TO DO FOR ME
I SAT IN A ROOM WITH SOMEBODY
ELSE'S DEAD CHILD INSIDE OF MY
WOMB FOR THREE HOURS WHILE HEARD
HER PARENTS SLEEK AND CRY IN
ROOM NEXT TO ME WENT THROUGH
C-SECTION AND WAS IN SILENCE --
WHEN I WAS THERE 5 DAYS PRIOR.
AS I WAS GOING TO LEAVE THE
HOSPITAL I WAS LOVE THE AND
CONFUSED WHAT HAPPENED NOBODY
GAVE ME AN ANSWER LAST THING I
REMEMBER ASKING MY OWE. B WHILE
EVERYONE WAS IN THE ROOM MY
FATHER ALSO A PHYSICIAN AND
HUSBAND AND BROTHER WHO WAS A
PHYSICIAN AND BABY'S PARENTS HER
MOM AND DAD AND TWO GRANDPARENTS
AND ASKED HER IF THIS HAPPENS
SHE TURNED AROUND AND LOOK AD
THE ME. THIS IS SO RARE THAT
LED TO ME INVESTIGATING FINDING
OUT 65 BABIES DIE EVERY DAY IN
THE UNITED STATES AND ONE THING
I HAVE EVERY SINGLE DAY SINCE
THIS STILLBIRTH I WAKE UP AND
FIRST THOUGHT I HAVE IS 65
MOTHERS TODAY ARE GOING TO LOSE
A BABY AND HAVE TO CARRY A DEAD
INSIDE OF THEIR WOMB. NO MATTER
HOW MANY MEETINGS I HAVE HAD IN
LAST YEAR AND A HALF NOTHING HAS
BEEN DONE ABOUT IT BUT THANK YOU
FOR YOUR STORY THAT LED MY
PROVIDER NOT BEING EDUCATED LED
TO THE BABY'S PARENTS HAVING
EXTREME GUILT NOT KNOWING AND
BLAMING ME THEY QUIT TALKING TO
ME AND TRIED TO SUE ME A YEAR
LATER. I'M STILL DEALING WITH
TRAUMA AND STILL GOING TO
THERAPY EVERY DAY. IT IS A NEW
WOUND THAT OPENS UP AS I HEAR
STORIES. IT IS HAERT WRENCHING
TO KNOW NOTHING IS BEING DONE
AND IS A LOW LEVEL OF EDUCATION
THAT EVERY PROVIDER I HAVE
ENCOUNTERED WHEN I CAME AT MY
WEEK APPOINTMENT 6 WEEK
APPOINTMENT AFTER MY STILLBIRTH
I HAD TO EDUCATE MY PROVIDER ON
WHAT AN EPV WAS SHE WAS DOCTOR
OF THE YEAR AT THE HOSPITAL LIKE
I SAID AND HAS HER OWN PRACTICE
FOR PAST 25 YEARS AND HAD TO
EDUCATE HER TO TEACH PATIENTS TO
TRACK FETAL MOVEMENT AND DO EVPS
-- IN NEW YORK DEALING WITH
PATIENTS WITH A LOSS AND TAUGHT
HER TO SUPPORT STILLBIRTH MOMS
AFTERWARD I WAS TOLD THIS WAS
SOMETHING THAT NEVER HAPPENED
AND MADE ME FEEL LIKE IT WAS
ABSOLUTELY MY FAULT AND TURNED
SOMETHING WONDERFUL I WAS DOING
INTO THE WORST THING OF MY LIFE.
I'M HERE TO ASK YOU TO PLEASE
TAKE STILLBIRTH PREVENTION AS A
NATIONAL URGENCY THAT IT IS. IT
IS BABIES AND MOTHERS ARE
DROPPING LIKE FLIES AND IT NEEDS
TO BE ADDRESSED. THANK YOU SO
MUCH.
>> THANK YOU CAMILA. I
APPRECIATE YOU HIGHLIGHTING
ISSUES AS OTHERS HAVE AROUND
MENTAL HEALTH AS WELL AS IVF AND
PREVENTABLE RISK FACTORS THAT IS
SOMETHING THAT WE LOOK CLOSELY
AT. THANK YOU FOR RAISING
THOSE.
IF I CAN NOW ASK ANNA VICK.
HAVE YOU JOINED US?
>> I AM HERE.
>> OKAY. PLEASE BEGIN.
>> I'M HERE WITH MY HUSBAND
JOSHUA VICK.
>> HELLO, HELLO.
>> THIS IS REPRESENTATION OF OUR
SON NATHANIEL WHO HAVE BEEN 7
THIS YEAR THIS LENGTH AND WEIGHT
HE WAS CLEARLY A BIG BOY READY
TO BE HOME WITH US. WE HAD A
PERFECT HEALTHY TEXTBOOK
PREGNANCY IT WAS CALLED EVERY
TIME WE CAME IN AND ALL OUR
CONCERNS WERE KIND OF SWEPT
ASIDE. I DID HAVE A FEW ISSUES
THROUGHOUT THE PREGNANCY FELT
WEAK AND NEVER TOOK AN EXTRA
LOOK AT MY SON AND LOOK BACK AND
WONDER IF THEY HAD GIVEN ME AN
EXTRA ULTRASOUND IN THE THIRD
TRIMESTER THEY MIGHT HAVE
NOTICED WHAT WAS HAPPENING WITH
MY SON'S CORD WE NOW FOUND OUT
TOOK ME A LOT OF WORK TO BE
HONEST. THE HOSPITAL DID
NOTHING TO HELP US FIND THE
CAUSE AND WE REQUESTED MEETINGS.
I STAYED UP EVERY NIGHT. I WAS
PROBABLY GOING INSANE AND PARENT
WHO IS A CHILD WHO IS SUPPOSED
TO BE BORN IN NEXT 2 MONTHS IS
TOLD WE DON'T KNOW WHY YOUR BABY
DIED. SOMETIMES HEALTHY BABIES
JUST DIE. THAT DOESN'T SIT WELL
WITH YOU. WASN'T HAERT BROKEN
AND MIND COULDN'T UNDERSTAND IT.
I AM EDUCATED WENT TO UCLA FOR
PSYCHOLOGY AND HAD A DAUGHTER
BEFORE. I DIDN'T UNDERSTAND HOW
MY SON JUST FLAT OUT DIED OUT OF
NOWHERE. CRASHED C-SECTION WENT
ANY WAS WORRIED NEVER TOLD ABOUT
FETAL MOVEMENT EITHER. I READ
ABOUT IT AND LOOKED IT UP AND
STARTED TO KICK COUNT HE WASN'T
RESPONDING WAY HE NORMALLY DOES.
HUSBAND STAYED HOME WITH OUR
DAUGHTER I WENT IN HAD A -- HAD
NO INFORMATION GIVEN TO ME.
DOCTOR FINALLY ARRIVED WE HAVE
TO TAKE YOUR BABY OUT HEARTBEAT
IS CRASHING AND CALLED MY
HUSBAND AND LET HIM KNOW THIS AT
THAT POINT I WAS PUT UNDERSTAND
AND I COULD PRAY FOR HIM AND FOR
ME I NEED TODAY LIVE IN
SITUATIONS THERE IS MORE RISK
FOR MOTHER AS WELL IT WAS CRASH
C SECTION AS I SAID. I WAS VERY
SCARED FOR MY OWN LIFE AND
HUSBAND HERE COULD GIVE A LITTLE
BIT OF HIS PERSPECTIVE AS A
FATHER. THIS HAS EFFECTED HIM
DEFINITELY ALSO.
>> OH, YEAH. DEFINITELY. PTSD
IS EXTREMELY A DIFFICULT THING
TO DEAL WITH. TOUGH PART FOR
ME. WAYS ON THE PHONE WITH HER
PRETTY MUCH THE WHOLE TIME ON
SPEAKER. WHEN THEY SAID THEY
HAD TO TAKE HIM OUTLET BABY AT
THE TIME, I HAD A FRIEND OF OURS
COME OVER AND WATCH OUR
DAUGHTER. I FLEW OVER THERE GOT
THERE AND SHE WAS BASICALLY
UNCONSCIOUS AND THEN THEY KIND
OF BROUGHT ME IN. I BEAT THE
DOCTOR THERE. HOWDY BEAT THE
MAIN DOCTOR THERE. I SAW HER
SLOWLY WALKING UP IN THE PARKING
LOT. I GOT TO THE ROOM BEFORE
SHE DID. THEY -- THEY WERE
TRYING TO BRING ME IN. OH, NO,
NO, NO. WE ARE HAVING PROBLEMS
I GUESS BROUGHT ME BACK OUT.
OKAY. I'M SITTING IN ROOM BY
MYSELF AND THEY SAID WE ARE
SORRY YOUR SON DIDN'T MAKE IT.
THEY BROUGHT ME IN.
THEY HAND ME OWEN. I'M SITTING
THERE AND ANA IS UNCONSCIOUS.
I'M HAVING TO DEAL WITH THE LOSS
OF OUR SON ALL BY MYSELF AND
FOUR RANDOM DOCTORS I DIDN'T
KNOW STANDING AROUND ME. I HAD
TO TELL HER WE LOST OUR SON WHEN
SHE WOKE UP. I HAD TO GO
THROUGH IT TWICE. THAT -- THAT
JUST DESTROYED ME.
THAT WAS IT FOR ME HONESTLY. I
-- THERE IS NO COMING BACK FROM
THAT. I DON'T CARE HOW STRONG
YOU ARE THERE IS NO COMING BACK
FROM THAT. IT HAS BEEN
EXTREMELY DIFFICULT ON ALL OUR
FAMILIES BECAUSE WHEN YOU EFFECT
THE PARENTS THAT EFFECTS OUR
LIVING CHILDREN AND YOU KNOW WE
OH, GOSH OH, WE FREAK OUT OVER
SO MANY THINGS MOST PARENTS
DON'T.
THAT EFFECTS THEM AND MAKES THEM
HIGH ANXIETY. SO, IT WAS VERY
TRAGIC.
>> OUR WHOLE PURPOSE WITH THIS
IS TO FIND THE CAUSE OF OUR
SON'S DEATH OURSELVES IS WE
WANTED TO BECOME PREGNANT AGAIN
WOULD HAVE HELPED WITH PREGNANCY
AFTER LOSS AND DOCTORS DID
NOTHING AND DISCOURAGED AUTOPSY
WE WERE TOLD SOMETIMES PARENTS
DON'T FIND OUT INFORMATION AND
REGRET DOING IT AND COSTS YOU
ALL OF THE MONEY AND BARRIERS
BEING PLACED FOR US TO FIND OUT
WHAT EXACTLY HAPPENED BUT GOT
THE FORTUNE OF FINDING OUT NOW 6
YEARS AFTER PLAS KREN TA
PATHOLOGY HE DIED FROM CORD
COMPLICATIONS HELPED ME AS A
GREEFR AND FOR PARENTS IT WOULD
BE VALUABLE TO HELP SAVE OTHER
LIVES I'M WORKING TO HAVE HIS
DATA UPDATED AND TOLD MANY IN
WAYS THIS WON'T HAPPEN BUT THEY
DON'T KNOW ME YET. I'M A MOTHER
WHO IS VERY DETERMINED AND MY
SON'S DEATH AND LIFE MATTERS.
YOU KNOW, THE REASON HE DIED
MATTERS AND IT WILL BE PUT IN
THERE SO OTHER PEOPLE CAN KNOW
AND IT CAN SAVE OTHER CHILDREN.
IT IS NOT JUST NOT HAPPENING FOR
ANY REASON NOT WE DON'T KNOW WHY
THIS IS HAPPENING IT IS WHAT
LOTS OF PARENTS ARE TOLD AND IT
CONTINUES TO BE A CYCLE AND
CRISIS CONTINUES WITH SAME
NUMBER OF BABIES DYING EVERY DAY
AND I CAN'T LIVE WITH MYSELF
WITH THAT INFORMATION AND SAME
AS CAMILA MENTIONED EVERY DAY I
THINK ABOUT THE 65 FAMILIES
GOING THROUGH THIS TODAY AND
BREAKS MY HEART AND MAKES ME
VERY ANGRY. SHOULDN'T BE
HAPPENING WE HAVE LOTS OF
INFORMATION AND LOTS OF DATA
BEING PUT IN WAS PRESENTED BY
DR. DUDLEY SINCE THIS IS INPUT
RIGHT AWAY AND THEY DON'T KNOW
AND AUTOPSIES ARE NOT BACK AND
WE DON'T HAVE PLACENTA PATHOLOGY
BACK WHY RUSHING THE PROCESS?
IF ANYBODY ELSE WE WOULD KNOW
WHY THIS PERSON DIED AND MAKE
SURE IT IS CORRECT AND GO BACK
AND CORRECT IT NOT JUST ON
PARENTS IT SHOULD BE SYSTEMIC
EVERYONE DESERVES TO KNOW A
REASON WHY MY SON DIED AND AVAIL
B WILLING FOR YOU FOR RESEARCH
FOR FAMILIES IN THIS COUNTRY AND
THANKS FOR YOUR TIME AND ALL YOU
ARE DOG TO HELP US SCOMBL THANK
YOU ANA AND JOSHUA FOR
HIGHLIGHTING DATA LIMITATIONS
AND ALSO FOR TALKING ABOUT
MENTAL HEALTH IMPLICATIONS WE DO
APPRECIATE IT. WE WILL SWITCH
GEARS A LITTLE BIT FOR
ORGANIZATIONS TO SPEAK TO US.
SO, I WILL NOW RECOGNIZE
MEREDITH MCCLOUD COBB. PLEASE
CORRECT ME WHO IS REPRESENTING
OLIVER'S WAY AND REMINDING FOLKS
AND WE WANT TO BE RESPECTFUL OF
PEOPLE JOINING OR WHO HAVE TO
LEAVE WE ARE TRYING TO KEEP
INDIVIDUAL COMMENTS TO THREE
MINUTES AND ORGANIZATIONAL
COMMENTS TO 5 MINUTES WHEN I
COME ON CAMERA YOU HAVE ABOUT A
MINUTE LEFT. TRYING NO THE TO
INTERRUPT. I RECOGNIZE THIS IS
A VERY DIFFICULT SITUATION. SO,
I'M TRYING TO BE RESPECTFUL. I
JUST WANT TO REMIND EVERYBODY OF
THE PARAMETERS AND REALLY
APPRECIATE YOU ALL BEING
ATTENTIVE TO THEM. MEREDITH, IF
YOU ARE WITH US FROM OLIVER'S
WAY.
>> YES. I HAVE SLIDES. I DON'T
KNOW IF -- GREAT. FANTASTIC.
>> THANK YOU.
>> THANK YOU. I'M WITH OLIVER'S
WAY, THE PUBLIC CHARITY MY
FAMILY ESTABLISHED TO CARRY ON
LIVING WORK OF OUR SON AND
BROTHER ILLIVER JAMES MCCLOUD
COBB. NEXT SLIDE, PLEASE. NEXT
SLIDE, PLEASE.
OLIVER DIED JANUARY EIGHTH TO
PREVIOUS SLIDE.
2021. [INDISCERNIBLE] WAS
HIGHLY EXPERIENCED. 35 + YEARS
EXPERIENCED WITH OB AND MF WAS
IN 70S AND CARE CONTINUITY
THROUGHOUT THE PREGNANCY AND
SAME TEAM AS MY PRIOR LIVING
PREGNANCY AND IMMEDIATE CAUSE OF
DEATH WAS INCORRECT
INTERPRETATION OF NST IF IN
HOURS BEFORE HIS DEATH AND
PRESENTED TO OB WITH CONCERNS OF
REDUCED FETAL MOVEMENT AND
ULTIMATELY FRANTIC MOVEMENT
DURING NST WITH NO PRIOR MEDICAL
EXPERIENCE. I DISPUTED NST
FINDINGS AND HER INTERPRETATION.
SHE RIPPED THE NST FINDING OR
NST REPORT OFF. AND ARGUED WITH
ME ABOUT THE INTERPRETATION. I
SUBSEQUENTLY FOUND OUT AFTER MY
SON'S DEATH WAYS INDEED CORRECT.
THERE WAS NO BASELINE TO BE
ESTABLISHED AND I SHOULD HAVE
BEEN ADMITTED TO THE HOSPITAL.
INVESTIGATIONS THAT WE COMPLETED
AFTER HIS DEATH WERE ALL LEAD BY
ME. THERE WAS NO PROCESS FOR
INVESTIGATING HIS DEATH. I WAS
SIMPLY PUSHED OUT BY THE
PHYSICIAN IN THE HOSPITAL TO
FIGURE IT OUT MYSELF AND SAW
7MFNS FOR CASE REVIEWS AND
FORTUNATE AND ONLY THING THAT
WENT RIGHT, OUGHT ONCY --
FORTUNATE WITH AMNIO WITH EX-OHM
CMA CARIO TYPE ALL NORMAL AND
REVIEW OF ALL MY ULTRASOUNDS.
NEXT SLIDE, PLEASE.
RISK FACTORS FOR STILLBIRTH IN
MY CASE WERE LARGE AND KNOWN
DURING PREGNANCY IS SON HAD
SINGLE UMBILICAL ARTERY AND
PROSTOGLANDON RELEASE DURING
PREGNANCY AND -- I HAD ADVANCED
CIRCLE DILATION FROM 26 WEEKS
ONWARD AND ER VISIT DECREASED
FETAL MOVEMENT AT 36 + WEEKS
KNOWN DURING PREGNANCY THERE WAS
[INDISCERNIBLE] AND MARGINAL
INSERTION OF MY CORD INTO THE
PLACENTA OF MY SON'S AND --
PROFUSION FINDINGS AND SIGNS OF
SUBACUTE CHRONIC AND ACUTE BRAIN
DAMAGE. NEXT SLIDE, PLEASE.
THE BOTTOM LINE IN MY CASE AND
WHEN I WANT YOU TO TAKE AWAY
FROM THIS IS ALL SIGNS POINTED
TO IMPENDING STILLBIRTH YET NO
ONE WAS LOOKING AT IT ASKED MFM
AFTER STILLBIRTH WEEKS PRIOR HE
SAID SHIT HAPPENS AND NOTHING WE
CAN DO ABOUT IT. RESEARCH CLEAR
PHYSICIAN'S ATTITUDES AROUND
STILLBIRTH EFFECT OUTCOMES
MATERNAL DEATH IS REGARDED AS
VERY SERIOUS EVENT IN HOSPITAL
AND REQUIRED TEAM TO LOOK AT
SITUATION AND STILLBIRTH IS
TREATED AS TRAGIC FETAL OUTCOME.
NEXT SLIDE, PLEASE.
ADDITIONAL FINDINGS, HE WAS
GENETICALLY AND ANATOMICALLY
NORMAL AND THERE WAS BRAIN
DAMAGE THROUGHOUT ALL MISSED.
OLIVER WOULD HAVE BEEN HOME.
THAT IS THE HAD HARDEST PART
ABOUT THIS IS IF I HAD FOLLOWED
MY GUT AND GONE TO A DIFFERENT
PROVIDER OR CONTINUED TO ARGUE
WITH HER ABOUT HER
INTERPRETATION OF THE NST, HE
WOULD HAVE BEEN HOME.
AND SO HE DIDN'T MAKE IT HOME
BECAUSE I TRUSTED MY PROVIDER.
INSTEAD, WE REBUILT OUR ENTIRE
LIVES AND WE MOVED STATES FOR
BETTER CARE AND SPENT THOUSANDS
ON GRIEF THERAPY FOR MY LIVING
SON AND MYSELF AND HUSBAND AND
PURCHASED BURIAL PLOTS AS A
FAMILY AND 5 ROUNDS OF IVF AND
UTTERIN SURGERY AND THOUSANDS ON
SUBSEQUENT PREGNANCY. NEXT
SLIDE, PLEASE.
THIS IS MY WISH LIST. I THINK
WE NEED TO FUND RESEARCH TO
CREATE A RISK PROFILE AND ALL
PREGNANCIES FOR STILLBIRTH AND
MATERNAL DEATH SUCH AS NEW
DIAGNOSES ARE ADDED OR EVENTS
OCCURRING IN PREGNANCY RISK
UPDATES AS WE GO. AND ALL OF
THE CARE TEAM AND MOTHER ARE
AWARE OF THIS RISK AND CAN BE
COUNTING MOVEMENTS AND DOG
EVERYTHING THEY NEED TO PREVENT.
SECONDLY, VERY IMPORTANTLY THERE
NEEDS TO BE A THIRD PARTY
OVERSIGHT COMMITTEE MANAGING
STILLBIRTHS AND FOR
INVESTIGATIONS AFTERWOIRDS WON'T
EXPECT CEO OF SHELL TO HEAD UP
THE EPA. NEXT SLIDE, PLEASE.
WE HAVE TO CREATE A MANDATED
WRIGHT AND PROCESS.
EXISTING MEDICAID AND INSURANCES
PREVENT WOMEN FROM GITTING A
SECOND OPINION AND HIGHLIGHTED
BY CDC AND THERE IS NO CURRENT
PROCESS FOR DOING THAT AND
ANOTHER ISSUE IN MIND IS OBGYNS
NOT REQUIRED TO HAVE NST
CERTIFICATIONS AND MANDATED
COVERAGE FOR AUTOPSIES ACROSS
MEDICAID AND COMMERCIAL
INSURANCE IS CRITICAL AND
PREVENTING ANOTHER STILLBIRTH
AND MATERNAL HEALTH IN GENERAL
AND MENTAL HEALTH AND
UNDERSTANDING YOUR CHILD'S
STORY. THANK YOU.
>> THANK YOU, MEREDITH.
THANK YOU.
>> THANKS.
>> SO, I WILL NOW TURN TO
JASMINE ABRAHAM FROM COUNT THE
KICKS. JASMINE, YOU BROUGHT
SLIDES SO WILL BRING THEM UP FOR
YOU IF YOU ARE WITH US.
>> YES, PLEASE. CAN YOU HEAR
ME?
>> YES.
>> GREAT.
>> JUST ASK TO BE RESPECTFUL OF
TIME.
>> ABSOLUTELY.
>> I WILL TURN IT TO YOU,
PLEASE.
>> GREAT.
HI, EVERYONE. WE WILL START OUT
HERE WITH A PAGE OF OUR BABY
[INDISCERNIBLE].
WE WANT TO TALK ABOUT
PREVENTION.
I APPRECIATE YOU ALL BEING HAD
HERE AND BEING WILLING TO LISTEN
TO OUR STORIES AND UNDERSTANDING
THERE IS SOMETHING AND A
SOLUTION THAT IS ALREADY OUT
THERE RIGHT NOW HELPING
STILLBIRTHS IN AMERICA. LOOK AT
FACES OF THESE BABIES AND
DOCTORS THAT DELIVERED THEM SAY
THAT COUNT THE KICKS IS WHAT
HELPED THEM BRING THESE BABIES
AND DELIVER THEM SAFELY.
MANY WOMEN THAT USED THE APP
SPOKE UP AND DOCTORS LISTENED
AND BECAUSE OF IT THAT YOU SEE
THESE BEAUTIFUL FACES. I'M
JASMINE ABRAHAM AND AMBASSADOR
FOR OHIO COUNT THE KICKS AND
HAPPY TO BE HERE SPEAKING ON
BEHALF OF OUR ORGANIZATION.
NEXT SLIDE, PLEASE.
ANY WA, WE HAVE HEARD FROM -- I
APOLOGIZE.
IT IS A PROVEN STILLBIRTH
PREVENTION ORGANIZATION IN THE
US THAT HAS EVIDENCE-BASED COUNT
THE KICKS CAMPAIGN.
THIS HAS HELPED SAVE BABIES IN
33 DIFFERENT STATES IN 5
DIFFERENT COUNTRIES SO FAR.
NEXT SLIDE, PLEASE.
ANY WA WHERE KROUNLT THE KICKS
BEGAN EXPERIENCED A 32%
REDUCTION IF IN STILLBIRTH FROM
2008 TO 2018 AND TODAY THEY
CONTINUE TO MAINTAIN NEAR
HISTORIC LOW STILLBIRTH RATE.
THERE IS TEEL DOTS AND AMERICA'S
STILLBIRTH RATE IS IN RED LINE
IN COMPARISON. WORKING WITH
IOWA -- OBSTETRICIANS TO ACHIEF
REDUCTION AS WELL AS OUTREACH TO
MOMS AND IN FIRST 5 YEARS OF
IMPLEMENTATION OF COUNT THE
KICKS THEY WERE ABLE TO REDUCE A
30 -- STILLBIRTH RATE BY 39%.
AND ESPECIALLY THAT WAS
SPECIFICALLY AMONG BLACK WOMEN.
ALEXANDER HAZEL IS PROMINENT
STILLBIRTH RESEARCHER FROM
MANCHESTER UNITED KINGDOM
PUBLISHING PAPER ON FETAL
MOVEMENT AND RECENTLY STUDIED
IOWA DATA COMING OUT REGARDING
COUNT THE KICKS COMPARING THEM
TO NEIGHBORING STATES WITH MUCH
HIGHER STILLBIRTH RATE. NEXT
SLIDE HAS A VIDEO.
>> IT IS REALLY IMPORTANT WE
LOOK AT IT IN CONTEXT OF
AMERICAN STILLBIRTH RATE. WE
KNOW THAT THE UNITED STATES OF
AMERICA HAS ONE OF THE HIGHEST
STILLBIRTH RATES IN HIGH INCOME
COUNTRIES AND ALSO SADLY ONE OF
THE LOWEST RATES OF IMPROVEMENT.
OVERALL UNITED STATES STILLBIRTH
RATE IS ONLY GOING DOWN AT NOT
.8% PER YEAR BETWEEN 2000 AND
2015.
SO, BEING ABLE TO DEMONSTRATE
THAT WE HAVE GOT A RATE GOING
DOWN 1% EVERY THREE MONTHS ANY
WA IS MUCH FASTER THAN THE
UNITED STATES POPULATION AVERAGE
TELLS US SOMETHING IS HAPPENING
ANY WA THAT IS NOT NECESSARILY
HAPPENING IN THE REST OF THE
UNITED STATESIN IOWA THAT IS NO
HAPPENING IN THE REST OF THE
UNITED STATES.
>> THAT IS TRUE. SOMETHING IS
HAPPENING IN IOWA THEY ARE FULLY
ENDORSING THE COUNT THE KICKS
CAMPAIGN. A LITTLE ABOUT ME, I
LEARNED ABOUT THE INFORMATION A
LITTLE TOO LATE. I ASKED DOCTOR
IN THIRD TRIMESTER APPS TOLD ME
TO START COUNTING KICKS WHETHER
COUNTING KICKS WAS ACTUALLY A
THING I SHOULD BE DOING. SHE
TOLD ME MY BABY WAS ACTIVE SO I
DIDN'T NEED TO WORRY ABOUT IT.
I LEARNED TO IGNORE MY SON'S
KICKS THAT WERE VERY PAINFUL AND
HE WAS VERY ACTIVE. CDC'S HEAR
HER CAMPAIGN LIST A CHANGE IN
BABY'S MOVEMENTS AS ONE OF 15
URGENT MATERNAL WARNING SIGNS
DIDN'T TELL WHY HOW HOAR TO
MONITOR THAT YOUR BABY IS
NORMAL.
OUR SON WAS BORN STILL AT 37
WEEKS IN JUNE OF 2020. I DON'T
THINK YOU CAN IMAGINE HOW
INCREDIBLY HARD IT WAS TO PICK
UP THE DIRT TO PUT ON MY SON'S
GRAVE. THIS WAS MY FIRST BABY.
THIS WAS MY FIRST PREGNANCY.
THIS IS THE OUTCOME.
I DIDN'T EVEN KNOW WHAT THE TERM
STILLBIRTH WAS UNTIL I WAS
HAVING ONE. NEXT SLIDE, PLEASE.
THE EVIDENCE-BASED COUNT THE
KICKS CAMPAIGN EDUCATES AND
EMPOWERS EXPECTANT PARENTSES TO
MONITOR BABY'S MOVEMENTS EVERY
DAY IN THIRD TRIMESTER AND AT
SAME TIME TO SPEAK UP IF THEY
NOTICE A CHANGE. IF I PRACTICED
KICK COUNTING I WOULD HAVE
REALIZED HE WASN'T MOVING AND
MAYBE WOE HAVE BEEN WITH ME
TODAY. NEXT SLIDE, PLEASE.
RESEARCH SHOWS THAT MORE THAN
HALF OF ALL STILLBIRTHS MOMS
NOTICE A CHANGE IN THEIR BABY'S
MOVEMENTS BEFORE THE BABY DIES
AND -- PROGRAMS ACROSS COUNTRY
TELL US TOO MANY MOMS WERE LIKE
ME AND DON'T KNOW THIS IS AN
IMPORTANT WARNING SIGN. NEXT
SLIDE, PLEASE.
WHEN MOMS ARE EDUCATED AND
EMPOWERED YOU ARE SPEAKING ABOUT
CHANGE IN MOVEMENTS AND YOU GET
A CHANCE TO INVESTIGATE AND
INTERVENE IF NECESSARY.
NEXT SLIDE, PLEASE.
BRIGHT YELLOW POSTERS AND
[INDISCERNIBLE] HAVE BEEN
CREATED FOR PROGRAM TO SPARK
KICK COUNTING CONVERSATION AND
THEY CATCH YOUR EYE AND BEING
ABLE TO TALK OPENLY WITH YOUR
PROVIDER IN UNDERSTANDING THAT
THIS IS A WAY TO GET TO KNOW
YOUR BABY AND TO BOND WITH YOUR
BABY HELPS TO PUT IT INTO A NOT
SO SCARY LIGHT.
NEXT SLIDE, PLEASE.
>> JASMINE, I WILL NEED TO ASK
YOU TO WRAP UP, PLEASE.
>> OKAY. I'M SO SORRY. I
COULDN'T TELL THAT YOU DIDN'T
POP UP. IF WE CAN SCROLL DOWN A
FEW SLIDES TO THE AMBASSADOR
PAGE?
>> THAT IS MY LITTLE RAINBOW.
THESE ARE THE WOMEN WORKING
ALONGSIDE OF ME. I SO
APPRECIATE YOU GUYS SPENDING
TIME LISTENING TO ALL OF US AND
KNOW THESE STORIES ARE HARD TO
HEAR AND TRUST ME. THEY ARE
EVEN HARDER TO TELL. THANK YOU
ALL FOR YOUR TIME.
>> THANK YOU, JASMINE.
AND I DO APPRECIATE THAT THERE
ARE OTHERS FROM COUNT THE KICKS
WHO ARE ALSO SPEAKING. THANK
YOU ALL FOR JOINING US TODAY.
SO, IF ALLIE FELKER IS WITH US?
>> I'M HERE.
>> OKAY. I WILL YIELD TO YOU
FOR THREE MINUTES.
THANKS SO MUCH FOR JOINING US.
>> THANKS SO MUCH. I'M ALLIE
AND SPEAKING IN HONOR OF MY SON
HANK WHO WAS STILLBORN ON JULY
1ST, 2020. DAY BEFORE HE DIED I
WENT IN FOR REDUCED FETAL
MOVEMENT GIVEN AN ULTRASOUND
WHERE ULTRASOUND TECH HAD ME
JUMPING UP AND DOWN AND COUNTING
CHANGE IN FOOT POSITION WHICH
WAS MOVEMENT I KNOW IS INCORRECT
WAY TO PERFORM ABPP. I WAS
NEVER EDUCATED ON IMPORTANCE OF
FETAL MOVEMENT OR WHAT IT COULD
MEAN FOR MOVEMENTS TO SLOW DOWN
OR IN MY CASE STOP. I WAS NEVER
TOLD THAT A HEALTHY NORMAL
PREGNANCY COULD END IN DEATH.
WHEN MINE DID MY PROVIDER
SHRUGGED HER SHOULDERS AND TOLD
ME SOMETIMES THESE THINGS
HAPPEN. YOU MIGHT NEVER FIND A
CAUSE. SHE WAS WRONG. THERE
WAS A CAUSE. HAD MY PRAG NANCY
ADHERED TO A STANDARD OF CARE MY
SON'S DEATH COULD HAVE BEEN
REVENTED ADDING INSULT TO
INJURY, CORRECT CAUSE OF DEATH
WAS NEVER FILED. AS A RESULT
I'M CURRENTLY PREGNANT WITH
THIRD CHILD AND NOW SPEND NEARLY
EVERY SINGLE APPOINTMENT
CORRECTING THE CAUSE OF MY SON'S
STILLBIRTH IN MY HEALTH HISTORY.
I WANT YOU TO TAKE A MOMENT AND
TO PUT YOURSELF IN MY SHOES.
MANY OF YOU HAVE CHILDREN. I
WANT YOU TO IMAGINE THAT EITHER
YOUR PREGNANCY OR YOUR PARTNER'S
PREGNANCY. I DID THE RIGHT
THING. I WEPT IN. I HAD THE
ULTRASOUND AND ULTRASOUND TECH
MADE IT SEEM I WAS AN OVERLY
CONCERNED PARENT AND SHE KNEW MY
CHILD BETTER THAN I DID. BEING
MADE TO FEEL A PROVIDER KNOWS
MORE ABOUT YOUR BODY THAN YOU DO
AND REALIZING THOSE PROVIDERS
WERE WRONG AND THEIR WRONG
DECISIONS LED TO THE DEATH OF
YOUR CHILD IS A PAIN NO PARENT
SHOULD HAVE TO ENDURE. YET, I
HEAR THE SAME STORY EVERY DAY AS
AN ADVOCATE WITH PUSH PARENTS
ARE MADE TO FEEL CRAZY AS THEY
BRING UP THEIR CONCERNS.
YOU HAVE HEARD ABOUT THE RACISM
THAT PERPETUATES LO S FOR BIPOC
FAMILY AND BRINGING YOUR
ATTENTION TO A SYSTEM THAT PLAYS
INTO THIS THAT IS SYSTEM OF
PATERNALISM. AS A RESULT I HAVE
THREE ASKS OF YOU, FIRST, ASK
YOU LOOK AT YOUR OWN PRACTICES
AND HAVE HUMILITY TO IDENTIFY
RACISM AND PATERNALISM.
SYSTEMATIC CHANGE BEGINS WITH
THE INDIVIDUAL. WE ALL NEED TO
LOOK INSIDE OF OURSELVES.
SECOND, I ASK YOU LOOK AT THE
NIH'S HISTORY WITH SIDS
IMPLEMENTATION SCIENCE AND
INFORMATION CAMPAIGNS HAVE SAVED
THOUSANDS OF LIVES. PLEASE LOOK
AT YOUR SUCCESSES AND DECIDE HOW
YOU CAN BUILD UPON THOSE
SUCCESSES TO SAVE BABIES LIVES
IN TERMS OF STILLBIRTH AND
PLEASE TELL CONGRESS IT IS
IMPERATIVE WE FIX DATA
COLLECTION SYSTEM FOR
STILLBIRTH. I GIVE MY TIME AND
ENERGY BECAUSE IT IS NOT TOO
LATE FOR OTHER BABIES.
>> THANK YOU SO MUCH ALLIE FOR
YOUR COMMENTS.
THIS DEFINITELY WILL BE
MENTIONED. I THINK IF WE -- WE
CANNOT TELL CONGRESS BUT YOU CAN
TELL CONGRESS. WE APPRECIATE.
>> BELIEVE ME, WE WILL.
>> I KNOW YOU WILL. THANK YOU.
SO, NOW I WILL TURN TO BOBBY
COLON AND HOPING I'M SAYING THAT
NAME CORRECTLY AND BOBBEE PLEASE
CORRECT ME IF I SAY IT
INCORRECTLY.
>> [INDISCERNIBLE] I'M HERE WITH
ME HUSBAND. WE ARE LOST
GRANDPARENTS.
JANUARY 23RD, 2013, PREGNANT
DAUGHTER TOLD ME THAT THE BABY
WASN'T MOVING AS MUCH. I DON'T
KNOW. OKAY. BUT SHE READ ON
THE INTERNET THAT BABIES DON'T
MOVE SO MUCH IN THE LAST
TRIMESTER AND NEXT DAY I WAS
WITH HER AT REGULAR 35 WEEK
CHECKUP AND DR. ASKED IS BABY
MOVING AND DAUGHTER SAID YES BUT
LESS AND OB SAID WHAT INTERNET
SAID THAT BABIES DON'T MOVE SO
MUCH IN LAST TRIMESTER FOLLOWING
ULTRASOUND AT THIS APPOINTMENT
TOGETHER WE HEARD THE WORDS I AM
SORRY. THERE IS NO HEARTBEAT.
DAUGHTER WAS INDUCED DELIVERING
DEAD BABY NEXT DAY IN EARLY
MORNING OF JANUARY 25TH 2013
WITH HUSBAND BY HER SIDE. WHY
WASN'T OUR DAUGHTER TOLD ABOUT
TRACKING BABY'S MOVEMENTS AND
WHY WOULD OB GIVE SAME FALSE
INFORMATION THAT DAUGHTER FOUND
ON INTERNET. QUOTE HEALTHY
PREGNANCIES AND HEALTHY CHILDREN
AND HEALTHY AND OPTIMAL LIVES
ARE GOALS FOUND OF THE NICHD
WEBSITE. THESE GOALS MUST
INCLUDE IN INCIDENTS OF PREVENT
BABLE STILLBIRTHS MEDICAL
PROVIDERS AND ELECTED OFUSHLS
HAVE RESOURCES EMPOWERED TO
LOWER INCIDENCE OF STILLBIRTH
GRANDSON OLIVER RESTS ETERNALLY.
WHAT YOU DO AT NICHD CANNOT
BRING HIM BACK. BECAUSE WE KNOW
PAIN OF HAVING HAD A BABY DIE WE
DON'T WANT THAT FOR OTHER
FAMILIES.
23,000 OTHER FAMILIES THAT WILL
SADLY JOIN THIS CLUB THIS YOOER,
LAST YEAR, AND NEXT YEAR IF YOU
DON'T DO ANYTHING TO CHANGE THIS
STATISTIC, A STATISTIC THAT
HASN'T CHANGED IN YEARS AND I
AND MY FAMILY CAN NO LONGER BE
EXCITED WHEN SOMEBODY ANNOUNCES
THEIR PREGNANCY AND KNOW THAT
STILLBIRTH CAN HAPPEN TO ANYONE
LIKE IT HAPPENED TO HEALTHY AND
FIT DAUGHTER AND KNOW STIL
BIRTHS CAN BE PREVENTED RESEARCH
HAS SHOWN THAT DAUGHTER AND SON
IN LAW WERE FORTUNATE ONES IF
YOU CAN CALL IT THAT RECOMMENDED
AUTOPSY PAID BY HOSPITAL AND --
MOST COUNTIES HAVE NONE AFTER
WAITING SEVERAL MONTHS RESULT TO
BE FETAL MATERNAL HEMORRHAGE
MEETING WITH OB AND PATHOLOGIST.
OB HAD FOUR CASES OF STIL BIRTH
THAT WERE ALL CAUSED BY FMH.
HOWEVER THERE IS NOT MUCH
RESEARCH ABOUT THESE CAUSES MANY
DOCTORS DIDN'T STUS IMPORTANCE
OF AUTOPSY AND PLACENTA REVIEW
MOST COUNTIES AND STATES DON'T
HAVE TRAINING -- WE NEED THIS
INFORMATION AND OTHER COUNTRIES
LOWERED INCIDENCE OF PREVENTABLE
STILLBIRTH AND YOUR COMMITTEE'S
WORK IS INSTRUMENTAL IN MAKING A
DIFFERENCE. NOW TODAY IN THE
UNITED STATES ANOTHER 65 BABIES
WILL DIE. DON'T LET THAT HAPPEN
TOMORROW. AND ALL THE
TOMORROWS. STILLBIRTH IS A
SILENT EPIDEMIC AND WELL PAST
TIME THIS BE ADDRESSED. IN A
FEW WEEKS WE WILL HONOR MEMORY
OF OLIVER'S 10TH BIRTHDAY WITH
AA CAKE BUT NOT OLIVER. THIS
GRANDMOTHER AND THIS GRANDFATHER
WOULD LIKE TO THANK YOU AND LOOK
FORWARD TO HEARING ABOUT NICHD'S
ACTIONS TO LOWIN KRIDENCE OF
PREVENTABLE STILLBIRTH.
>> THANK YOU SO MUCH. THANK YOU
SO MUCH FOR YOUR REPRESENTATION
NOT ONLY OF YOUR DAUGHTER AND
SON IN LAW BUT OF YOUR FAMILY.
IF WE CAN, I BELIEVE THE NEXT
SPEAKER IS SEAN SUMILAS.
HOPEFULLY I GOT IT SEMIRIGHT.
>>
>> YES. GOOD JOB.
>> PLEASE GO AHEAD.
>> THANK YOU.
TWO DAYS BEFORE MY SON DIED I
NOTICED A DECREASE IN HIS
MOVEMENTS TOLD BY MY PROVIDE ERR
HE WAS SETTLING DOWN FOR BIRTH.
ZACK WAS MY SECOND CHILD. I WAS
NEVER EDUCATED IN EITHER
PREGNANCY ABOUT IMPORTANCE OF
TRACKING MY BABY'S MOVEMENTS.
EXPERIENCES LED ME TO BE ARIZONA
AMBASSADOR FOR COUNT THE KICKS
SINCE 2013. THIS PAST YEAR
PARTNERED WITH ARIZONA
DEPARTMENT OF HEALTH. I'M A
COMPLEXITY SCIENTIST AND MEMBER
OF MATERNAL CHILD HEALTH
TRANCINGLATIONAL TEAM -- TO
WRITE THE FETAL INFANT MORTALITY
ACTION PLAN FOR THE STATE OF
ARIZONA.
THESE RULES HELP ME HAVE A
DEEPER UNDERSTANDING OF DIRE
STATE OF STILLBIRTH AND MATERNAL
DEATH IN OUR COUNTRY. DEEPLY
TROUBLING TO SEE 12 YEARS AFTER
LOSING MY SON THINGS HAVE NOT
GOTTEN BETTER. IN ONE PANDEMIC
LATER EMERGING EVIDENCE IS
SHOWING THINGS HAVE GOTTEN WORSE
ESPECIALLY FOR WOMEN OF COLOR.
MOMS AND BABIES CONTINUE TO DIE
AT ALARMING RATES. THIS IS
EMOTIONAL. I INCLUDE MOMS. WE
KNOW STILLBIRTH COMES WITH
INCREASED RISK OF MATERNAL
MORTALITY AND MORBIDITY. I
ATTEST TO THIS FIRSTHAND I WAS
CONSIDERED A NEAR MISS. LOST 3
TIMES MY BLOOD VOLUME GOING INTO
DIC. FAMILY TOLD I HAD LESS
THAN 20% CHANCE OF SURVIVAL. I
FACE SIGNIFICANT LIFE LONG
HEALTH ISSUES 20 YEARS LATER.
MY BMI WAS NORMAL. I HAVE NEVER
SMOKED. I'M NOT A DRUG USER. I
DID YOGA. HAD OPTIMAL NUTRITION
AND TOOK CARE OF MYSELF. AS
LIKE MANY OTHER STILLBIRTH
FAMILIES I KNOW I DIDN'T FIT
HEALTH MARKERS LISTED BY NIH AS
LEADING TO STILLBIRTH CAUSES.
CONSEQUENTLY FACTS ARE CLEAR.
DATA RESEARCH AND STILLBIRTH
INITIATIVES OTHER THAN COUNT THE
KICKS HAVE BEEN STALLED IN OUR
COUNTRY FOR OVER A DECADE
RELYING ON INSUFFICIENT AND
OUTDATED DATA IS COSTING LIVES.
AS A STILLBIRTH MOM AND
SCIENTIST I'M URGING NIH TO HELP
PROTECT ALL OUR CHILDREN AND
FUTURE GENERATIONS BY FOCUSING
ON FOLLOWING IN 2023.
ASSIST WITH IMPLEMENTING A
NATIONAL STILLBIRTH DATA
COLLECTION SYSTEM. COUNTRIES
LIKE AUSTRALIA HAVE DONE THIS
SEEING A REDUCTION IN
STILLBIRTH. INITIATE STUDY ON
EFFICACY ON COUNT THE KICKS BABY
SAFE STORIES THAT
[INDISCERNIBLE] SPEAK FOR
THEMSELVES INITIATE QUALITATIVE
STUDIES. LIVED EXPERIENCES WILL
IDENTIFY ADDITIONAL HEALTH
MARKERS FOR STILLBIRTH PAVING
WAY FOR IMPLEMENTATION OF
EFFECTIVE STILLBIRTH PREVENTION
INITIATIVES.
FINALLY, HOPE IS NARRATIVE
AROUND STILLBIRTH IS STARTING TO
CHANGE. A KEY PIECE TO MAKING
THIS HAPPEN SUCCESSFULLY IS FOR
RESEARCHERS AND SCIENTISTS TO
TRULY LISTEN TO STILLBIRTH
FAMILIES. NOW THAT WE KNOW
BETTER WE MUST DO BETTER. I
APPRECIATE YOUR TIME TODAY.
>> THANK YOU SHAWN AND FOR YOUR
COMMENTS AND RECOMMENDATIONS.
WITH THAT MOVING TO NEXT SPEAKER
ALICE ABEND. HOPE I SAID IT
RIGHT. THANK YOU. ALEX, PLEASE
GO AHEAD.
>> THANK YOU. I'M ALEX AND
MOTHER OF JAMES ROBERT WHO IS A
STILLBORN BABY BOY THAT SHOULD
TURN 1 NEXT WEEK. WEPT IN FOR
RETURN OB VISIT GESTATIONAL
HYPERTENSION AND BECAUSE OF THAT
GETTING ROUTINE BIOPHYSICAL
PROFILES JAMES HAD ONE DONE AND
PASSED AND ONE IN FEW IN
PRACTICE WHO CHECKS CHECK AND
DOES DOPPLAR AFTER ULTRASOUND
TURNS OUT NORMAL DID DOPPLAR --
THEY DID SECOND ULTRA SOUND AND
HEART BEAT DOWN TO 90 AND DOCTOR
TOLD US TO GO TO LABOR AND
DELIVERY IN HOSPITAL.
GETTING CONGRATULATIONS FROM
RECEPTIONIST WAITING TO BE
HOOKED UP TO MONITOR TALKING
ABOUT INSURANCE WE FIN WILL I
GOT ANOTHER ULTRA SOUND AND THIS
TIME TOLD SON HAD NO HEARTBEAT
WHOLE EXPERIENCE FROM INITIAL OB
VISIT TO HEARING SON DIED IN MY
WOMB LASTED UNDER TWO HOURS
DELIVERED HIM 9 HOURS LATER VIA
C-SECTION. DOCTOR HUME ANL
ENOUGH TO KNOW I WOULD BE AT
RISK OF -- LANDED IN SAME
HOSPITAL ROOM DUE TO -- IT
WASN'T UNTIL THE 6 MONTH
ANNIVERSARY OF DEATH THROUGH
ORGANIZATIONS SUCH AS PUSH AND
RAINBOW CLINIC FIRST IN THE
UNITED STATES THAT WE WERE ABLE
TO GET ANSWERS JAMES DIED OF
CORD ACCIDENT COMBINATION OF
MARGINAL INSERTION SOMETHING I
DIDN'T KNOW HE HAD AT 20 WEEK
ANATOMY SCAN. WE ARE NOW TODAY
JANUARY FIFTH 2023 JUST 6 DAYS
FROM JAIM'S 1 YEAR ANNIVERSARY.
I'M 19 WEEKS PREGNANT WITH OUR
SECOND CHILD AFTERMATH OF
STILLBIRTH IS LIFE CHATTERING
I'M SPECIAL EDUCATION ATTORNEY
AND ALL CLIENTS ARE CHILDREN
TRIGGER IN AND OF ITSELF
APPROACHING JANUARY 11TH
PREGNANT AGAIN FLASHBACKS
NIGHTMARES SYMPTOMS OF PTSD
PREGNANT AND GRIEVING HONORING
DEAD SON GROWING A HOPEFULLY
ALIVE BABY GIRL ALL AT SAME
TIME. SOME THINGS JUST HAPPEN.
SPEAKING TODAY NOT BECAUSE I
THINK JAIM'S DEATH NECESSARILY
COULD HAVE BEEN PREVENTED HE
DIED IN FRONT OF MEDICAL
PROFESSIONALS IN REAL-TIME BUT
UNACCEPTABLE TO ME WOMAN LIVING
IN UNITED STATES -- AND ANY
OTHER AREA OF SCIENCE WHEN WE
FIND SOMETHING WE DON'T KNOW AND
CAN'T UNDERSTAND WE DON'T LEAVE
IT BE BUT ASK OURSELVES WHY DOES
IT HAPPEN AND HOW DOES IT HAPPEN
BUT FOR SOME REASON STILLBIRTHS
DON'T GET THAT ESPECIALLY THOSE
WITH CORD ACCIDENTS. IN THIS
COUNTRY IT IS UNACCEPTABLE TO ME
WE DON'T UTILIZE TOOLS AVAILABLE
TO US AS 21ST CENTURY FOR EVERY
PREGNANCY WE CAN TRAVEL TO OUTER
SPACE AND MAKE PEOPLE CANCER
FREE DRIVING ELECTRIC CARS WHY
CAN'T WE FIND OUT WHY
STILLBIRTHS HAPPEN AND CORD
ACCIDENTS HAPPEN WHEN PLACENTAS
ARE SMALL AND HOW TO FIX IT THIS
GROUP HAS TO INCREASE RESEARCH
AROUND STILLBIRTH AND STANDARD
OF CARE AROUND ALL PREGNANCIES
AND PREGNANCY OUTCOMES THANK
YOU.
>> ALEX, THANK YOU. WE SHARE
YOUR SENTIMENT TOO OWE FRN THAT
WOMEN'S HEALTH ISSUES ESPECIALLY
MATERNAL HEALTH AND INFANT
OUTCOMES ARE VERY MUCH
UNDERSTUDIED. WE DO WHAT WE
CAN. WE VERY MUCH APPRECIATE
THAT SENTIMENT AS WELL.
I WILL NOW INVITE ANNE FROM
MEASURE THE PLACENTA AS AN
ORGANIZATION TO SPEAK.
I MAY POP UP. I WILL TRY AND
GIVE YOU A SIGNAL AS WELL.
>> THANK YOU SO MUCH FOR HOLDING
THIS MEETING. I APPRECIATE
THIS. I CANNOT SEE THE SLIDES.
CAN ANYBODY ELSE?
THERE WE GO.
MY NAME IS DR. ANNE O'NEIL AND
I'M DIRECTOR OF MEASURE THE
PLACENTA AND WE HAVE A GOAL TO
SEE PLACENTA SIZE MEASURE
PREGNANCY RISK FACTOR PER
OUTCOMES AND NEXT SLIDE THERE.
PR
-- ON DUE DATE BACK IN 2018
VERY HEALTHY PREGNANCY AND HAD
NO KNOWN RISK FACTORS AND SEEING
PICTURE ON LEFT THIS IS PART OF
HIS FUNERAL PROGRAM. -- THIS IS
WHAT WE CAME UP WITH FOR COVER
OF HIS PROGRAM.
WE HELD HIM AFTER HE WAS BORN
AND CREMATED HIM AND ASKED A
MILLION QUESTIONS AND
PATHOLOGIST THREE MONTHS AFTER
HIS DEATH SAID I DON'T KNOW WHY
YOUR SON DIED. ONE THING THEY
IGNORED COMPLETELY NEXT SLIDE,
PLEASE.
IT WAS HIS PLACENTA. ELIJAH WAS
A BIG BABY A LITTLE OVER 80TH
PERCENTILE. THIS IS ALMOST
COMPLETELY IGNORED FINAL CAUSE
OF DEATH IN INITIAL PATHOLOGY
REPORT WAS CAUSE OF DEATH
UNKNOWN.
PHD IN ENVIRONMENTAL SCIENCE
WHEN I HAVE QUESTIONS LIKE THIS
I WILL GO TO THE RESEARCH. NEXT
SLIDE, PLEASE.
COMBING THROUGH RESEARCH WAS
DEVASTATING CONFUSING MAKING ME
FEEL LIKE A CRAZY PERSON.
GRAPHS LIKE THIS HERE PAPER 2012
MANY YEARS BEFORE ELIJAH'S
STILLBIRTH SHOWING PLACENTA ON X
AXIS PROBABILITY OF STILLBIRTH
YOU CAN SEE CLEARLY PLACENTA IS
SMALLER PROBABILITY OF
STILLBIRTH INCREASES NOTING
GRAPH GOES DOWN TO Z SCORE OF
NEGATIVE 2 AND FAMILIES WE
CONNECTED WITH HAVE SCORES MUCH
SMALLER THAN NEGATIVE 2 AND THIS
STUDY FOUND THAT PLACENTA SIZE
IS RISK FACTOR INDEPENDENT OF
BIRTH WEIGHT NOT SUFFICIENT TO
LOOK AT FETUS TO DETERMINE IF
PLACENTA IS SMALL THIS FOUND
THAT ROUGHLY 7 TAEN% OF ALL
BIRTHS IN STUDY LARGE STUDY
80,000 BABIES 80% OF THESE
BIRTHS WERE ATTRIBUTED TO SMALL
PLACENTA. NEXT SLIDE, PLEASE.
FIVE MINUTES CAN'T GO THROUGH
RESEARCH LICHG IING.
IMAGINE ME AS A LOST MOM I HAVE
BEEN TOLD.
THIS IS SOMETHING THAT ALL OF
THE PAPERS HAVE IN COMMON THEY
SAY IF WE COULD MEASURE PLACENTA
SIZE DURING PREGNANCY WE COULD
AVERT LOW RISK PREGNANCY
STILLBIRTHS THAT HAPPEN. NEXT
SLIDE, PLEASE.
WE HAVE CONNECTED WITH DR.
HARVEY AT [INDISCERNIBLE]
ELIJAH'S STILLBIRTH HE AND HIS
FATHER COLLABORATED TO COME UP
WITH SIMPLE MEASUREMENT PLACENTA
VOLUME THREE MEASUREMENTS FREE
REQUIRING STANDARD ULTRASOUND
NOT FANCY REQUIRING TECHNOLOGY
NOT MUCH TIME WE SHOULD
INTEGRATE INTO PRENATAL CARE.
MANY LOSS FAMILIES WROTE OVER
5,000 LETTERS TO ACOG IMPLORING
DEMANDING WE GET PLACENTAS
MEASURED. ONE THING COMING OF
THIS NEXT SLIDE, PLEASE.
IT WAS A MEETING WITH DR.
CHRISTOPHER ZAHN. HE SAYS WE
WOULD BE HAPPY TO IMPLEMENT EPV
ONCE RESEARCH IS THERE SHOWING
ACCEPTABLE TO IMPLEMENT THIS IN
LARGE SCALE. YOU HAVE TO GO
TALK TO THE NHD AND ASK THEM TO
FUND A LARGE PERSPECTIVE STUDY
ON EPV. I'M HERE ON BEHALF OF
LOSS FAMILIES AND CHRISTOPHER
ZAHN AT ACOG WHO TOLD ME TO ASK
YOU THIS.
I WILL END HERE WITH A GRAPH.
THIS IS DATA IN THE PUREST CAUSE
AND EFFECT SENSE OF THE WORD.
WE SUBMITTED FOR RFI. THESE ARE
PLACENTA SIZES GESTATIONAL AGE
AT STILLBIRTH AT FAMILIES WHO
SIGNED R FCHL I. THESE ARE
FAMILIES WONDERING IF BABY'S
PLACENTA IF MEASURED DURING
PREGNANCY IF THEIR BABY WOULD
STILL BE HERE. PLEASE I IMPLORE
YOU TO FUND RESEARCH NEEDING TO
HAPPEN TO GET RESEARCH ACCOUNTED
FOR DURING PREGNANCY. THANK YOU
FOR LISTENING.
>> THANK YOU, ANNE. RECOGNIZING
THAT NHCD IS ONLY INSTITUTE
SYSTEMICALLY MEASURING PLACENTA.
WE HAVE A FULL INITIATIVE ON IT
THIS IS ALIGNED WITH OUR WORK
AND THANKS FOR HIGHLIGHTING IT.
LAURA DRAKE, IF YOU ARE ON AND
FOLKS I WANT TO REMIND WE ARE
GOING BACK INTO INDIVIDUAL
SESSIONS.
SO, WE ARE ASKING YOU TO STAY
WITHIN THREE MINUTES IF POSSIBLE
AND TRYING TO BE RESPECTFUL OF
TIMES WE TOLD PEOPLE THEY WOULD
PRESENT AND HAD ADJUSTMENTS.
LAURA, ARE YOU AVAILABLE?
>> I'M HERE. CAN YOU HAD HEAR
ME?
>> GO AHEAD. JANUARY FIFTH TWO
YEARS AGO I HEARD MY DAUGHTER
HAD NO HEARTBEAT.
IF FUNDING IS A CONCERN COST OF
THINGS HAVE BEEN COVERED LIKE
MENTAL HEALTH HAVE BEEN
TREMENDOUS I WAS UNDER CARE OF
FETAL MEDICAL DOCTOR -- THE
INFORMATION PROVIDED BY HER WAS
NOT AS ACCURATE AS WONDERFUL
INFORMATION I KNOW EXISTS
THROUGH PUSH HARD PREGNANCY AND
COUNT THE KICKS 10 MOVEMENTS IN
TWO HOURS I WAS TOLD WOULD BE
FINEMENT [INDISCERNIBLE] BECAUSE
OF MY INTERIOR PLACENTA NEVER
EDUCATED ON FRANTIC MOVEMENT IN
HINDSIGHT SHE HAD A FEW WEEKS
PRIOR. DIAGNOSTIC ULTRASOUND TO
CHECK FOR POTENTIAL CAUSES TO
PLAN FOR FUTURE PREGNANCIES
BEFORE SHE DETERIORATED FURTHER.
I HAPPENED TO PREVIOUSLY ATTEND
A SUPPORT GROUP FACILITATED BY
THERAPY WHO WAS A GRIEF DOULA
WHO I CALLED FROM THE HOSPITAL.
LOS ANGELES HOSPITAL ACTED LIKE
IT WAS REALLY UNUSUAL NO
PROTOCOL CHECKLIST SEEMED TO
EXIST UP TO MYSELF IN LABOR AND
HUSBAND TO RESEARCH ADVOCATE AND
IMPLEMENT TESTING DR. KLEINMAN
DETERMINED LACK OF DEATH WAS
FETAL MATERNAL HEMORRHAGE.
TESTING AND CHROMOSOMAL TESTING
WAS NORMAL AND PLACENTA SIZE
RISK FOR BLEEDING MONITORING
DATA POINT ALONG WITH BETTER
MOVEMENT EDUCATION IN BIRTH
COUNTRY OF AUSTRALIA WOULD SHE
CELEBRATE SEKTD BIRTHDAY THIS
YEAR INDUCED LABOR FIVE DAYS NOT
OFFERED C SECTION OR RISKS WITH
HEMORRHAGE OF PROLONGED LABOR
PLACENTA DIDN'T DETACH RUSHED
INTO EMERGENCY SURGERY. I ENDED
UP WITH SCAR TISSUE RENDERING ME
UNLIKELY TO CARRY A PREGNANCY
AGAIN. [INDISCERNIBLE] WHEN I
FINALLY WOKE UP TIME WITH HER
WAS EXTREMELY LIMITED. ALSO A
STANDARD OF CARE HAD TO WEIGH
PRECIOUS TIME WITH HER AGAINST
POTENTIAL ACCURACY OF AUTOPSY
RESULTS. IF WE WANT TO GIVE
CHANCE OF LIFE USE GESTATIONAL
CARRIER SELF-FUNDED IF I OR
SOMEONE IN DEMOGRAPHIC PERCEIVED
GETTING HIGHEST STANDARD OF CARE
WENT THROUGH THIS HOW KI
ADVOCATE FOR SOMEONE CONSIDERED
LOW RISK OR IN RURAL AREA WITH
LESS ACCESS WE SHOULD BE DOING
EVERYTHING TO SAVE BABIES THAT
COULD BE SAVED IF SAVE ONE IT IS
WELL WORTH IT. THANKS FOR YOUR
TIME.
>> LAURA, THANK YOU SO MUCH.
>> I WILL INVITE ELENA. P
E-LENA, ARE YOU WITH US?
>> I AM. CAN YOU HEAR ME?
>> I CAN.
>> GREAT. THANK YOU SO MUCH.
THANK YOU. I APPRECIATE YOU
HOSTING THIS TODAY AND FOR
ALLOWING US TO TELL OUR STORIES.
MY FIRST SON DYLAN WOULD BE 8
YEARS OLD.
HE WAS STILLBORN ON JULY 4TH
2014. EVERY TIME I TELL HIS
STORY I CHOKE UP. 33 WEEKS
GESTATION. AFTER A NORMAL AND
HEALTHY PREGNANCY AND DIED DUE
TO PLACENTAL ABRUPGS WITH NO
KNOWN RISK FACTORS EXTENSIVE
TESTING AFTER HE DIED COULDN'T
FIND A CAUSE FOR PLACENTAL
ABRUPGS. GONE IN DAY BEFORE
DYLAN DIED I HAD CRAMPING AND
DISCOMFORT. TWO HOURS OF
MONITORING I WAS SENT HOME
DURING MONITORING HAERT RATE WAS
NORMAL WASN'T HAVING
CONTRACTIONS DOCTORS THOUGHT I
HAD UTI. WITHIN 12 HOURS OF US
BEING AT HOME HE DIED.
I AM HERE TODAY AND I'M A.
>> PARTICIPANT: OF PUSH
PREGNANCY. WE NEED TO DO
BETTER. WE NEED TO INCREASE
RESEARCH AND UNDERSTANDING WHY
THIS HAPPENS AND IN PARTICULAR
WHEN THERE IS COMPLICATIONS WITH
THE PLACENTA.
THANK YOU.
>> E-LENA, THANK YOU SO MUCH FOR
BRINGING THAT STORY FORWARD AND
FOR TALKING ABOUT THE PREVENTIVE
AND MISSED OPPORTUNITIES.
WE DO APPRECIATE IT.
WHAT I WOULD LIKE TO DO, I
THINK, RACHEL, I SEE YOU. I
WILL MOVE TO -- I WILL HOPE I
DIDN'T GET THIS WRONG.
ONCOVICH.
>> THAT IS PERFECT.
>> OKAY. PERFECT, RACHEL.
MOVING TO YOU AND THANK YOU FOR
JOINING US TODAY. PLEASE GO
AHEAD AND BEGIN.
>> MY DAUGHTER WAS BORN ON A
WEDNESDAY AT 37.5 WEEKS PREGNANT
SEPTEMBER 16TH, 2020. SHE WAS
NAMED AFTER GREAT GRANDMOTHER --
THE DOCTOR SLICED OPEN MY
ABDOMEN AND LIFTED INTO AIR AND
BODY CARRIED AROUND
[INDISCERNIBLE]. THERE ARE NO
WORDS TO DESCRIBE WHAT IT FELT
LIKE TO SEE HER FACE AND ONLY
ANALOGIES I CAN COME UP WITH ARE
RELIGIOUS AND I CAN DESCRIBE
HER. IT IS INSUFFICIENT. SHE
HAD BROWN HAIR. SHE HAD BROWN
HAIR AND WAS 19.5 INCHES LONG
AND WEIGHED 5 POUNDS AND 15.3
OUNCES AND IS LOVED BEYOND
MEASURE. HER SKIN SOFTER THAN
SILK AND HER HAND SOMEHOW LOOKED
LIKE MY HAND AND IS ADORED WITH
EVERY OUNCE OF MY BLOOD AND HAD
A SWEET CLEFT CHIN A DOMINANT
TRAIT FROM MY IMMEDIATE FAMILY
SHE WAS CREMATED COPIES OF
FOOTPRINTS BUT NOT HANDPRINTS
SHE DIED ON WAY TO NEW MOON. I
PAID A LOT OF MONEY OUT OF
POCKET TO LEARN THAT.
SHE WAS AUTOPSIED BUT I WAS TOLD
THAT THERE WAS NO CAUSE.
I HAD TOLD OUR DOCTOR'S PRACTICE
HER MOVEMENT CHANGED THREE WEEKS
AND 2 WEEKS BEFORE SHE DIED.
EACH TIME THEY SHRUGGED AND TOLD
ME THAT HAPPENED WHEN BABIES
PREPARE FOR BIRTH. TOO TRUSTING
OF THE MEDICAL SYSTEM TO KNOW
THEN WHAT I SHOULD HAVE -- WHAT
I KNOW NOW THAT IS
[INDISCERNIBLE] MY FULL MOON
BRIGHTEST LIGHT OF THE DARKEST
HOUR I WILL NEVER KNOW THE COLOR
OF HER EYES AND HAD TO TELL MY
MOTHER HER GRANDDAUGHTER WAS
DEAD AND MOTHER TOLD MY FATHER.
I DON'T BLAME THE INDIVIDUAL
DOCTORS THAT SAW US DURING
PREGNANCY AND DON'T DISLIKE THEM
PARTICULARLY BUT BLAME LACK OF
FUNDING, RESEARCH, STOP GAP
MEASURES IN THE MEANTIME AND
BLAME BROKEN SYSTEM TRAINING
DOCTORS WITH INCORRECT
INFORMATION AND POLICIES THEY
ARE TAUGHT TO FOLLOW AND BLAME
SYSTEM THAT [INDISCERNIBLE]
QUANTITY OF PATIENTS RATHER THAN
QUALITY OF CLAIRE SUMMER SALTED
TO END BREACH TO BIRTHING
POSITION I WAS AT RISK AND
MEDICAL PROFESSIONAL TOLD ME IT
WAS CUTE AND DID AGAIN BETWEEN
DEATH AND BIRTH HENCE C SECTION
BREACHED DEAD BABIES COULD BE
BEHEADED IF BIRTHED VAGINALLY.
C SECTION NEVER HEALED CORRECTLY
I WAS IN LABOR YOOR WHEN I GOT
IT 1 YEAR LATER HAD TO HAVE
CORRECTIVE LAPAROSCOPIC SURGERY
TO RESTORE FERTILITY I'M 27
WEEKS PREGNANT AND SCARED WHEN
HE IS MOVING AND SCARED WHEN HE
MOVES HE WILL COMPRESS HIS CORD.
I COULD FEEL HER SELF THROUGH MY
SKIN AND COULD CRADLE MY HANDS
AROUND HER HEAD SOMETHING I
NEVER GOT TO DO WITH HER OUTSIDE
OF MY BODY AND HER MEMORY IS MY
GREATEST BLESSING BUT SHE
DESERVED TO LIVE A LONG LIFE.
THANK YOU.
>> THANK YOU, RACHEL.
>> THANK YOU FOR POINTING OUT
SOME OF THE SYSTEMIC PIECES OF
THIS I THINK WE CAN HIGHLIGHT
AND THINK WE ALSO HEARD.
I WILL TURN NOW TO MARNEY
SMIDGE. ARE YOU HERE? SCOMBL
YES.
>> PLEASE GO AHEAD.
>> MY NAME IS MARNEY SMIDGE AND
SON BORN IN 2020 AND WOULD BE 3
TODAY. I WANT TO TALK ABOUT
POWER OF NIH AND SUCCESS STORY
THEY HAVE SAVING BABIES. IN
EARLY 1990S NIH EMPLOYED MAIRI
AN WILLINGER WHO OVERSAW
RESEARCH PROGRAMS ON SIDS SHE
LED THE SAFE TEST LEAD CAMPAIGN
TELLING PARENTS TO PUT BABIES ON
THEIR BACKS THIS CAMPAIGN
REDUCED RATE OF SIDS RELATED
DEATH IN US BY 50% OVER 15
YEARS.
I WANT TO REPEAT THAT THIS
CAMPAIGN REDUCED SIDS DEATHS BY
50%, WHICH IS AN ASTOUNDING
ACCOMPLISHMENT THAT WENT FROM
4,000 TO 2,000.
I WANT TO DIRECTLY ADDRESS THE
STILLBIRTH COUNCIL.
I IMPLORE YOU NOW TO TURN YOUR
ATTENTION TO ANOTHER ISSUE
THREATENING LIVES OF THOUSANDS
OF BABIES, STILLBIRTH AND DEMAND
RESEARCH AND RESOURCES TO
ULTIMATELY DRIVE PREVENTION
THROUGH IMPLEMENTATION SCIENCE
WITH SAFE TO SLEEP CAMPAIGN NIH
SAVED THOUSANDS OF LIVES AND
EDUCATED THE NATION. WE HAVE
SEEN THE POWER OF THE NIH AND
THE PEOPLE YOU WORK WITH. I
WANT TO REMIND YOU THE COUNCIL
OF THE POWER YOU HOLD.
AS HIGHLY ESTEEMED DOCTORS, YOU
HAVE INCREDIBLE PRIVILEGE.
SOCIETY GIVES YOU RIGHTS AND
LICENSES THAT IT GIVES TO NO ONE
ELSE AND RETURN FOR PROMISE TO
PUT INTEREST OF THOSE YOU CARE
FOR AHEAD OF YOUR OWN. THAT
PROMISE AND OBLIGATION GIVE YOU
VOICE AND PUBLIC DISCOURSE
BECAUSE OF THE OATH YOU HAVE
SWORN AND ARE ASKING YOU PEOPLE
IN POWER TO SAY TO OTHERS IN
POWER THAT WE CANNOT ALLOW 3,000
BABIES STILLBORNS EACH YEAR.
EPIDEMIC FUELED BY RACISM,
COMPLACENCY FATALISM POVERTY AND
INJUSTICE WE REMIND YOU YOUR
VOICE IS POWERFUL AND YOU CAN BE
LOUD AND FORCEFUL. YOU WILL BE
TRUSTED. IN HONOR OF MY SON
HEATH AND ALL BABIES THAT SHOULD
BE WITH US, I ASK YOU TO USE
YOUR VOICE. THANK YOU.
>> THANK YOU, MARNEY. THANK YOU
FOR THE TRIBUTE TO DR.
WILLINGER, WHO WAS PART OF OUR
STAFF. THANKS FOR HIGHLIGHTING
HER WORK AND THANKS FOR YOUR
VERY POWERFUL MESSAGE.
>> THANK YOU.
>> I WILL NOW TURN TO DOMINIQUE
RICE. DOMINIQUE, I BELIEVE I
JUST SAW YOU.
>> YES, I AM HERE.
>> OKAY. GREAT. PLEASE GO
AHEAD.
>> THANK YOU. I AM DOMINIQUE
RICE, MOM TO TJ. I WANT TO
ACTUALLY INVITE THE COUNCIL OR
THE MEMBERS IF THEY FEEL SO
CALLED TO SHOW YOUR CAMERA OR
TURN IT OFF THAT WOULD BE GREAT
AND WOULD LOVE THE OPPORTUNITY
AFTER SUCH AN EXPENSIVE DAY
HEARING AND HOLDING OUR STORIES
TO ACTUALLY SEE YOUR FACES AND
SEE WHO IS ON THE RECEIVING END.
I AM NOT GOING TO GO SO IN DEPTH
IN MY STORY BECAUSE YOU HAVE
SPENT THE ENTIRE PAST HOUR AND A
HALF WITH US IN WHAT I REFER TO
AS A SACRED SPACE.
THIS IS THE TRANSFER OF ENERGY
FOR US. WE LIVE THIS EVERY
SINGLE MINUTE OF THE DAY.
BEING PART OF THIS GROUP, WE
RECOGNIZE THAT IT TAKES COURAGE.
YOU ARE ON THE FRONTLINE. WE
ARE ENTRUSTING OUR HEARTS AND
OUR CHILDREN WITH YOU FOR THE
BENEFIT TO CREATE CHANGE THAT
MUST HAPPEN IN THIS EPIDEMIC
THAT IS STILLBIRTH.
SO, I WANT TO PAUSE AND
RECOGNIZE THAT AFTER A GOOD TWO
HOURS THIS CAN BE EMOTIONAL. I
URGE YOU TO NOT LOOKING AWAY.
DO NOT LOOK AWAY. MY SON TJ'S
DEATH WAS PREVENTABLE LIKE THE
HANDFUL OF BIRTHING PARTNERS
HERE ON THIS CALL TODAY. WE ARE
MORE THAN JUST A NUMBER. MY SON
TJ IS ONE OF FIVE. HE HAD A
PERFECT PREGNANCY UNTIL IT WAS
NOT. THERE IS A CLEAR, CLEAR
DISCREPANCY OF THE EDUCATION OF
OUR PRACTITIONERS.
IT IS A RACIST SYSTEM THAT HAS
TO BE ADDRESSED. ALL OF THE
WORK THAT IS DONE HERE IN THIS
GROUP, FRONT AND CENTER, MUST BE
EQUITABLE ADDRESSING
SPECIFICALLY FRONT AND CENTER
OUR BLACK FAMILIES.
IF WE DON'T FIND A SOLUTION, WE
ARE GOING TO CONTINUE SEEING
BLACK FAMILIES AND THEIR
CHILDREN DIE.
ONCE WE ADDRESS THIS EPIDEMIC,
CAN WE SEE ANY CHANGE?
AND WITH THAT, I AM HERE CALLING
TO THE COUNCIL MOVING FORWARD AS
YOU -- AS YOU REGROUP AND TAKE A
LOOK AT YOUR NOTES SEEING HOW
MANY FAMILIES SHARED X, Y, AND
Z. THAT FRONT AND CENTER.
FRONT AND CENTER IS SOLUTIONS
FOR OUR BLACK FAMILIES.
WITH THAT, IT IS ESSENTIAL THAT
WE LOOK AT VARIOUS FACTORS NOT
THE TRADITIONAL. I WILL SAY
TRADITIONAL FACTORS, WHICH ARE
ALSO ROOTED IN RACISM. OKAY?
I THINK THAT IS EXTREMELY
IMPORTANT FOR EVERYONE HERE TO
RECOGNIZE. I WILL CALL YOU TO
PLEASE. I WILL URGE YOU AND
LIST YOU, WHEN YOU GO BACK IN
YOUR ROOMS TO -- TO DEBRIEF AND
TO RESEARCH WHAT THAT
ESSENTIALLY MEANS.
WE HAVE TO COLLECTIVELY DO THIS
TOGETHER IN LISTING THE CHARITY
PARTNERS ACROSS THE COUNTRY.
I GO BACK TO ONE OF THE -- THE
HANDFUL OF RECOMMENDATIONS AS
WELL REALLY HAVING AND WALKING
HAND IN HAND WITH OUR PARENTS
THAT HAVE EXPERIENCED
STILLBIRTH. JUST LIKE YOUR
WORKING GROUP BEING SOME OF THE
BRILLIANT ACROSS THE COUNTRY, WE
BIRTHING PARENTS IN THIS
COMMUNITY HERE, ARE SOME OF THE
MOST BRILLIANT INDIVIDUALS. WE
HAVE HAD TO EDUCATE OURSELVES SO
THAT WE COULD SAVE OTHER PEOPLE
BECAUSE OF THE SYSTEMIC ISSUES
THAT WE ARE CLEARLY FACING.
SO, I WANT TO BRING IT BACK AND
THANK YOU ALL FOR TURNING ON
YOUR CAMERAS SO I CAN SEE YOUR
FACES AND IN MAKING THAT
COMMITMENT AND SEEING MORE THAN
JUST A PAPER AND SEEING MORE
THAN JUST A NUMBER. ALL THESE
TREMENDOUS FAMILIES HERE, WE
HOLD THIS EVERY SINGLE DAY. WE
HOLD THIS EVERY SINGLE DAY. IT
IS BEYOND JUST ONE EVENT. WE
LIVE THEIR DEATH EVERY SINGLE
DAY.
WITH THAT, JUST TO KIND OF
RECAP, RESEARCH, EQUITABLE
RESEARCH, EQUITABLE RESOURCES
THAT FRONT AND CENTER SUPPORT
OUR BLACK FAMILIES AND
MARGINALIZED COMMUNITIES, OKAY?
IT MUST HAPPEN. IN ADDITION TO
THAT, REALLY TAKING A
PARTNERSHIP WITH PARENTS; RIGHT?
NO MATTER WHAT THEIR EDUCATION,
NO MATTER WHERE THEY COME FROM
ACROSS THE COUNTRY, WE ARE AN
ASSET. WE BOTH HAVE A SIMILAR
GOAL OF, YOU KNOW, CREATING OR
REALLY TACKLING STILLBIRTH
NUMBERS ACROSS THE COUNTRY
BECAUSE IT MUST HAPPEN. WE WANT
TO MAKE SURE THAT MOVING FORWARD
AND WE KNOW THAT HERE WE ARE ON
JANUARY FIFTH. THE NEXT
OPPORTUNITY, WE WANT TO BE AT
THE TABLE AND LISTEN TO
COLLECTIVELY. THIS IS AN
OPPORTUNITY FOR US TO REALLY
PARTNER AND LEVERAGE SOME OF OUR
GRASSROOTS PARTNERSHIPS THAT WE
HAVE HAD OR GRASSROOTS RESOURCES
THAT WE HAVE FROM
INTERNATIONALLY AS WELL AS
REALLY ACROSS THE COUNTRY.
SO, I URGE YOU TO PLEASE, YOU
KNOW HEAR WHAT WE HAVE TO SAY.
THANK YOU FOR THE TIME. I'M
COMPLETE. ONCE AGAIN I'M
DOMINIQUE RICE, MOTHER TO TJ.
THANK YOU.
>> THANK YOU DOMINIQUE. THANK
YOU FOR RAISING YOUR POINTS.
WE REALLY DO HEAR THEM.
I WILL TURN NOW TO ROSE MARRY
TURNIYAY SPEAKING ON BEHALF OF
THE NATIONAL CENTER FOR FATALITY
AND PREVENTION. ROSE MARRY, ARE
YOU WITH US?
YOU ARE MUTED OR WE ARE HAVING
SOUND ISSUES.
TAKE A MOMENT.
>> CAN YOU HEAR ME NOW?
>> I CAN.
>> THANK YOU. MY HEADSET WAS A
PROBLEM. I APOLOGIZE AND THANK
YOU ELLIS FOR THIS OPPORTUNITY.
I'M ROSE MARRY AND SPEAKING ON
BEHALF OF NATIONAL CENTER FOR
FATALITY REVIEW AND PREVENTION
AND NATIONAL CENTER IS FEDERALLY
FUNDED DATA AND RESOURCE CENTER
SUPPORTING CHILD DEATH REVIEW
AND FETAL INFANT MORTALITY
PROGRAMS ACROSS THE COUNTRY AND
GRATEFULLY ACKNOWLEDGE
PARTNERSHIP AND FUNDING FROM
HEALTH RESOURCES AND
ADMINISTRATION AND COMMENTS
TODAY ARE SOLELY MY
RESPONSIBILITY AND SHOULDN'T BE
CONSTRUED AS OFFICIAL POSITION
OF THE US GOVERNMENT. I WANT TO
START BY OFFERING FIRST
HEARTFELT CONDOLENCES TO ALL
SPEAKERS WHO PROCEEDED ME AND
HONOR THEIR GRIEF AND STORIES
AND COURAGE BRINGING EXPERIENCES
HERE TO THIS GROUP TODAY.
I'M OFFERING MY COMMENTS TO
BRING TO THIS STILLBIRTH WORKING
GROUP COUNCIL GREATER AWARENESS
OF PROGRAM AND NEED IT MEETS AND
AS WE HEARD IN THE THREE
PREVIOUS MEETINGS BEFORE TODAY
BURDEN OF FETAL INFANT MORTALITY
IN THIS COUNTRY IS HUGE. EVERY
YEAR OVER 21,000 INFANTS BORN
LIVE DIE BEFORE THEY REACH THEIR
FIRST BIRTHDAY AND EQUAL NUMBER
OF PREGNANCIES IN US OR IN
STILLBIRTH OR FETAL DEATH.
REVIEW IS A COMMUNITY BASED
ACTION ORIENTED PROGRAM AIMED AT
IMPROVING SERVICES SYSTEMS AND
RESOURCES FOR WOMEN AND INFANTS
AND FAMILIES AND THE PROGRAM
BRINGS TOGETHER
MULTI-DISCIPLINARY COMMUNITY
TEAMS TO EXAMINE CONFIDENTIAL
DEIDENTIFIED CASES OF FETAL AND
INFANT DEATH FOR PURPOSE OF
UNDERSTANDING FAMILY'S
EXPERIENCES INCLUDING RACISM AND
HOW THOSE EXPERIENCES HAVE
IMPACTED THEIR PREGNANCY
OUTCOMES AND GOAL OF FEMUR IS
TAKING WHAT WE CAN LEARN FROM
CASE REVIEWS TO PREVENT
TRAGEDIES FROM HAPPENING TO
OTHER FAMILIES AND WANT TO BRING
TO YOUR ATTENTION A COUPLE KEY
OPERATING PRINCIPLES OF FEMUR
FETAL AND INFANT DEATHS ARE
EVENTS ILLUSTRATING NEED FOR
INVESTIGATION AND ACTION. FEMUR
FOCUSES ON SYSTEMS ISSUES NOT
PLACING BLAME OR PERSONAL
RESPONSIBILITY ON INDIVIDUALS OR
BEHAVIORS AND PARENT AND FAMILY
INTERVIEW WE INCLUDE WITH FEMUR
PROCESS GIVES VOICE TO THOSE WHO
LOST AN INFANT OFFERING
INFORMATION THAT IS NOT
AVAILABLE THROUGH ROUTINE
QUANTITATIVE METHODS THAT I
HEARD ON THIS CALL SO MANY SPEAK
OF THE NEED FOR DATA. I BELIEVE
THAT THE FEM YOU ARE PROGRAM
MEETS THE NEED WITH
UNDERSTANDING VOICES OF THE
FAMILIES AND FEMUR REVIEWS LEAD
TO IDENTIFICATION OF SYSTEMS
FACTORS CONTRIBUTING TO
STILLBIRTH AND INFANT MORTALITY
AND FEM YOU ARE FOCUSES ON
PREVENTION AND FINDINGS LEAD TO
EFFECTIVE RECOMMENDATIONS THAT
IS INFORMED BY VOICES OF THOSE
WHO HAVE LOST AN INFANT
IMPROVING SYSTEMS OF CARE,
RESOURCES AND SERVICES FOR
WOMEN, INFANTS AND FAMILIES AND
TODAY THERE ARE APPROXIMATELY
152 LOCAL FEM YOU ARE PROGRAMS
OPERATING IN 26 STATES AND
DISTRICT OF COLUMBIA AND 2
ADDITIONAL US TERRITORIES.
WE CAN DO MORE. FEMURS REACH
AND IMPACT CAN BE IMPROVED BY
EXPANSION OF PRO PROGRAM TO
LOCAL OR STATE JURISDICTION
WISHING TO IMPROVE SURVEILLANCE
PREVENTION EFFORTS AROUND
STILLBIRTH AND INFANT DEATHS AND
SEEN FIRSTHAND POSITIVE IMPACT
FEM YOU ARE CAN HAVE CON
COMMUNITIES CAN REGISTERED NURSE
SERVING 30 YEARS IN LOCAL STATE
NATIONAL EFFORTS -- INFANT
DEATHS THROUGH FEM YOU ARE
PROCESS AND ENHANCING
BEREAVEMENT SUPPORT AND SERVICES
FOR FAMILIES. FEM YOU ARE
BROUGHT ABOUT ADOPTION OF
EVIDENCE BASED EFFORTS LIKE
COUNT THE KICKS AND IN-DEPTH
EXPLORATION TO CONTRIBUTORS TO
FETAL INFANT MORTALITY AND
HAVING A CLEARER UNDERSTANDING
OF UNDERLYING RISK FACTORS AND
INEQUITIES THEY MAY NOT
OTHERWISE IDENTIFY. THANK YOU
FOR THIS OPPORTUNITY TO SPEAK TO
THE COUNCIL.
>> THANK YOU ROS EMARY AND FOR
YOUR WORK IN THE AREA SUPPORTING
THOSE IN THE COUNTRY WITH DATA
THEY NEED. WE APPRECIATE YOUR
COMMENTS VERY MUCH.
LOOKING AT OUR LIST AND LOOKING
TO SEE IF FERNANDA SHER ADDONE
HAS JOINED US TODAY. ARE YOU
WITH US?
>> SHE HAD TO DROP OFF
UNFORTUNATELY. SHE HAD A
CHILDCARE ISSUE.
>> SORRY. TRYING TO KEEP US ON
SCHEDULE AS MUCH AS POSSIBLE.
PLEASE, WE SEND APOLOGIES TO
FERNANDA. I WILL REACH OUT.
THANKS FOR LETTING ME KNOW.
I WILL TURN TO AMANDA FELTMAN.
ARE YOU STILL AVAILAVAILABLE, A?
>> I'M HERE.
>> OKAY, AMANDA. PLEASE GO
AHEAD.
>> HI. I'M AMANDA AND MOM OF
THREE BEAUTIFUL GIRLS AND HERE
IN ANGER TODAY OF MY DAUGHTER
JUNIPER'S PREVENTABLE DEATH.
THERE IS MY BEAUTIFUL GIRL.
PART OF MY STORY AND OUR
EXPERIENCE IS I WAS INVOLVED IN
STILLBIRTH PREVENTION PRIOR TO
THE DEATH OF MY OWN DAUGHTER.
LOCAL STAR LEGACY FOUNDATION AND
BEFORE I WAS PREGNANT WITH OUR
FIRST DAUGHTER I WENT THROUGH
TRAINING TO BE VOLUNTEER
PHOTOGRAPHER FOR FAMILIES IN
LOSS SITUATIONS AND GOT PREGNANT
WITH JUNIPER NOT MADE AWARE OF
IMPORTANCE OF MONITORING FETAL
MOVEMENT. 20TH ULTRASOUND THEY
IDENTIFIED SHE WAS MEASURING
SMALL IUGR. I WAS SENT TO BE
UNDER CARE OF IFM. HIGH LEVEL
OF MFM CARE I WAS NOT MADE AWARE
TO MONITOR HER FETAL MOVEMENTS
IN FACT I FELT THE OPPOSITE I
DIDN'T HAVE TO MONITOR FETAL
MOVEMENTS I HAD WEEKLY AND TWICE
A WEEK NSTS AND MBPPS. SEEN BY
SO MANY DOCTORS I DIDN'T FEEL I
COULD QUESTION THE CARE I WAS
GIVEN. WHEN SHE DIED AND WAS
BORN TWO THINGS SHOULDN'T HAVE
HAPPENED IN THE ORDER MY
TRAINING WITH THE LEGACY I KNEW
WHAT TO DO IN A HOSPITAL MANY
DIDN'T KNOW WHAT TO DO IN THE
SITUATION. I DIDN'T KNOW WHAT
CAME NEXT. I KNEW THAT OR
THOUGHT THAT AFTER BEING A NURSE
UNDER SUCH CLOSE CARE THAT THE
DOCTORS WOULD BE ASKING
QUESTIONS OR IT THAT I COULD ASK
QUESTIONS.
IT FELT LIKE I HAD TO PUSH FOR
MOR APPOINTMENTS AND ASK THOSE
QUESTIONS AND GETTING PREGNANT
AGAIN WAS TERRIFYING AND
REMEMBER MY OB ASKING ME WHAT
MOR CAN WE DO AFTER BEING UNDER
SUCH CLOSE CARE IT FELT LIKE AN
INSANE REQUEST. I LEARNED ABOUT
EPV AND MEASURING PLACENTA
DURING PREGNANCY WHICH WAS
SOMETHING ON RADAR WHEN JUNE WAS
MEASURING SMALL. I LEARNED
ABOUT THAT WHEN I WAS PREGNANT
WITH SECOND DAUGHTER WHO IS
THANKFULLY WONDERFULLY HERE
ALIVE. I LEARNED THAT DOCTORS
DID NOT WANT TO DO ANYTHING
MORE. I WAS ASKED WHAT MORE
COULD WE DO IN MY CARE.
PUSHBACK. IT WAS UNNECESSARY
AND THEY DIDN'T KNOW WHAT TO DO
WITH THE INFO. I LEARNED
BASICALLY THAT THEY DIDN'T WANT
TO PREVENT STILLBIRTH IS HOW IT
FEELS, ANYWAYS.
BECAUSE OF THAT I HAVE BECOME AN
ADVOCATE ON INSTAGRAM AND HAVE A
COMMUNITY OF MOMS WITH DEAD BABY
MOMS IF YOU WILL. I SHARE LOTS
ABOUT THE GRIEF EXPERIENCE THERE
AND IMPORTANCE OF MONITORING
FETAL MOVEMENTS AND IMPORTANCE
OF MEASURING THE PLACENTA AND
WRITTEN LETTERS TO ACOG DON'T
KNOW HOW MANY LETTERS I
SEPTEMBER TO THEM HOPING THEY
WILL START TO PAY ATTENTION TO
THIS IMPORTANT STILLBIRTH
PREVENTION METHOD AND I ALSO
PARTICIPATED IN MEETINGS LIKE
THIS AND GOING BACK TO HOW I
STARTED MY INTRO, I GO AND I
PHOTOGRAPH FAMILIES WHOSE BABIES
HAVE DIED IN THE HOSPITAL.
WHILE I HAVE BEEN ON THE CALL
TODAY I HAVE BEEN EDITING PHOTOS
OF A BABY BOY THAT DIED AND WAS
BORN JUST BEFORE CHRISTMAS. HIS
MOM COMPLAINED TO HER DOCTOR
ABOUT FETAL MOVEMENT ALPS FOR
TWO WEEKS AND NOTHING WAS DONE
AND THEN HE DIED. ALL THAT
BEING SAID, ALL OF THE ADVOCACY
THAT IS HAPPENING AND ALL
PREVENTION AND THE SYSTEM THAT
WE ARE WORKING WITH IS NOT DOG
ENOUGH TO SAVE BABY'S LIVES AND
NEED TO SEE IMPROVEMENTS AND
STANDARDS OF CARE IMPROVE AND I
HAVE TO STOP GETTING CALLS TO
PHOTOGRAPH BABIES WHO HAVE DIED.
THANK YOU.
>> THANK YOU AND THANK YOU
AMANDA. I WILL SAY WHAT YOU DO
IS SO IMPORTANT, I KNOW, TO YOUR
FAMILY BUT ALSO TO THOSE OTHER
FAMILIES AND KNOW PERSONALLY
THAT HAS MADE A DIFFERENCE FOR
FRIENDS OF MINE AND THANK YOU
FOR PROVIDING THAT SERVICE TO
OTHERS AND THANK YOU FOR SHARING
YOUR STORY.
IF I CAN, IS KELLY FRIEDRICH
STILL ON?
>> YEAH. HI. THANKS SO MUCH
FOR THIS OPPORTUNITY.
>> GO AHEAD.
>> I WISH THAT I DIDN'T KNOW
THAT THE DEAD BABY MOMMA CLUB IS
A SID I WISH I WASN'T PART OF IT
I FOUND AMANDA ON INSTAGRAM AND
TO FIND THAT COMMUNITY AND AGAIN
YOU WISH YOU DIDN'T HAVE TO BE
PART OF THAT CLUB. WE ARE SOME
OF THE STRONGEST MOMS I THINK I
HAVE EVER MET. APRIL 2 EIGHTH,
2021 GAVE BIRTH TO FIRST SON
WILLIAM JAMES 6 POUNDS 2 OUNCES
20 INCHES LONG NEVER GOT TO SEE
EYES OR HEAR HIM CRY. BORN
STILL AT 36 WEEKS PREGNANCY
TOTALLY NORMAL PERFECTLY HEALTHY
LITTLE BOY AND GROWTH ULTRASOUND
ON THURSDAY AND LOOKED GREAT SO
WIGGLY WE COULDN'T GET PICTURE
OF HIS FACE. SATURDAY AND
SUNDAY TWO VIRTUAL BABY SHOWERS
ASKED FAMILY AND FRIENDS TO SEND
FAVORITE CHILDREN'S BOOKS WITH
LETTER WRITTEN TO WILL INSTEAD
OF SENDING GIFTS ON ZOOM-IN HIS
NURSERY LOVED ONES TOLD ME BUY
BOOKS THAT ARE THEIR FAVORITES
TOLD THEM I WAS EXCITED TO MEET
HIM IN A FEW WEEKS MONDAY
MORNING WOKE UP EARLY COULDN'T
GO BACK TO SLEEP DECIDED TO GET
UP START MY DAY MAKING BREAKFAST
JOLT OF I DON'T REMEMBER THE
LAST TIME I FELT WILL MOVE.
WOKE UP HUSBAND AND TOLD HIM WE
HAVE TO GO TO DOCTOR. OB'S
OFFICE TRIED TO DO ON STRESS
TEST COULDN'T FIND HEARTBEAT
NURSE PRACTITIONER CAME WITH
DOPPLAR COULDN'T FIND HEARTBEAT
I'M A NURSE KNEW HE WAS GONE
WAITED TO ULTRASOUND ROOM TO
OPEN UP AND LEAVE. WHEN SAW
WILL KNEW IMMEDIATELY HE HAD
GONE FIRST BABY DIED WENT HOME
WAITED FOR DOCTOR TO CALL US TO
TRY TO MAKE A PLAN AND SOBBED
ASKING PHYSICIAN THERE WITH US
YOU MEAN I HAVE TO GIVE BIRTH TO
A DEAD BABY AND SHE SAID YEAH.
I HAD TO CALL MY FAMILY AND CALL
OUR FRIENDS AND CALL MY BOSS AND
TELL THEM WE WON'T BE BRINGING A
BABY HOME. I HAD TO GIVE BIRTH
TO A BABY THAT HAD DIED.
TUESDAY MORNING WE DROVE TO THE
HOSPITAL AND STARTED THE
INDUCTION PROCESS. 28 HOURS
LATER 12:45 P.M. WEDNESDAY APRIL
2 EIGHTH, WILL WAS BORN. PLACED
ON CHEST AND GOT TO HOLD FIRST
SON HE NEVER GOT TO CRY HE WAS
PERFECT AND LOOKED EXACTLY LIKE
MY HUSBAND. SPENT TIME WITH
WILL AND GOT TO TAKE SOME
PICTURES. I WAS DISCHARGED HOME
WITHOUT OUR BABY 6 HOURS AFTER
GIVING BIRTH. LEFT HOSPITAL NOT
KNOWING WHY SON DIED I'M SURE IF
WE EVER WOULD HAVE AN ANSWER
FROM THE FIRST HOUR WE FOUND OUT
ABOUT WILL DYING PEOPLE TOLD US
YOU PROBABLY WON'T GET AN ANSWER
OR FIND OUT THESE THINGS HAPPEN
SOMETIMES WE HAD AN AUTOPSY DONE
AND WISH I DIDN'T KNOW HOW MUCH
IT COSTS TO HAVE AN AUTOPSY ON
MY CHILD. HIS CAUSE OF DEATH IS
LISTED AS UNKNOWN IT WAS NOTED
HIS PLACENTA WAS REALLY SMALL.
WASN'T SATISFIED WITH THIS
ANSWER HOW COULD A BABY DIE AND
NOT KNOW CAUSE. WE SOUGHT OUT
DR. COLLIDEMAN AT YALE AND
LOOKED AT WILL'S PLACENTA IN 0.3
PERCENTILE FOR HIS BODY WEIGHT.
AT 36 WEEKS 6 POUND 2 OUNCES
WILL'S DEATH PREVENTABLE
PLACENTA MEASURED THROUGHOUT MY
PREGNANCY HE WOULD HAVE BEEN
HERE OR EDUCATED ON IMPORTANCE
OF KICK COUNTS AND NORMAL
MOVEMENT PATTERNS HE WOULD HAVE
BEEN HERE NOT HAVING TO LEAVE
HOSPITAL WITH BOX INSTEAD OF
BABY NO FAMILY SHOULD HAVE
ENDURE LIFELONG DEVASTATION AND
HEARTBREAK OF LOSING A CHILD. I
WON'T STOVE DEMANDING CHANGE AND
APPRECIATE YOU LISTENING TO OUR
STORIES AND HOPE WE CAN MAKE A
DIFFERENCE IN CHANGING THE
OUTCOMES AND CHANGING TRAJECTORY
OF STILLBIRTHS IN THIS COUNTRY
AND THANK YOU YOUR TIME.
>> THANK YOU, KELLY. THANK YOU
SO MUCH.
SO, I WILL NOW TURN TO DEB HANY.
I WILL TRY THIS, DEB. MY HOPE
IS I HAVE [INDISCERNIBLE].
>> THAT WAS ACTUALLY GOOD. NO.
YOU ACTUALLY GOT THE HARDER ONE
CORRECT AND SIMPLER ONE WAS A
LITTLE BIT OFF. STILL VERY
IMPRESSIVE. THANK YOU.
>> [LAUGHING].
>> THAT ALWAYS CATCHES EVERYONE
UP. THANKS FOR HAVING US AND
EVERYONE FOR STILL BEING HERE.
IT HAS BEEN A LONG DAY. SO,
YES. SO, THANK YOU FOR THE
OPPORTUNITY TO SPEAK HERE TODAY
AND TO STILLBIRTH WORKING GROUP
FOR HELPING US SHINE A LIGHT ON
THIS STILLBIRTH CRISIS IN THE US
AND SORRY WE HAVE TO BE HERE
HAVING THIS CONVERSATION.
AGAIN, MY NAME IS DEB AND I'M
AUTUMN JOY'S MOB AND STILLBIRTH
ADVOCACY IS NOT WHAT I IMAGINED
I WOULD DO WITH MY LIFE. JULY
EIGHTH, 2011 LIFE CHANGED WHEN I
BROUGHT LIFELESS BABY GIRL INTO
THIS WORLD. CHANGED ME IN WAYS
I CAN'T BEGIN TO EXPLAIN AND
LIFE NEVER BEEN SAME SINCE SPENT
PAST 11 YEARS -- STILLBORN BABY
INTO THE WORLD WHICH IS WHY I'M
HERE TODAY. MY DOCTORS LED ME
TO BELIEVE LOSING HER WAS AS
RARE AS BEING STRUCK BY
LIGHTNING. I BELIEVED THEM. I
DIDN'T KNOW WHAT A STILLBIRTH
WAS OR SOMETHING LIKE THIS COULD
HAPPEN TO ME AND SOON LEARNED
THAT WASN'T THE CASE AND
STILLBIRTHED ARE ONE OF MOST
COMMON ADVERSE PREGNANCY
OUTCOMES IN US LED TO BELIEVE
PREGNANCY WILL RESULT IN HEALTHY
BABY. REALITY IS THAT IS NOT
TRUE. SINCE AUTUMN DIED OVER
260,000 BABIES HAVE BEEN
STILLBORN IN THE COUNTRY.
NUMBER GETS TO ME. DESPITE
THESE NUMBERS [INDISCERNIBLE]
MOST UNDERFUNDED AND
UNDERSTUDIED PUBLIC HEALTH
ISSUES TODAY PREGNANCY AND
POSITIVE BIRTH OUTCOMES WE TAKE
FOR GRANTED AFTER STILLBIRTH
MARRIAGES FAIL FAMILIES FALL
APART FRIENDSHIPS DISSOLVE AND
CAREERS LOST NEGATIVE IMPACT OF
STILLBIRTH IN SOCIETY AND STIGMA
THAT FORCES FAMILIES TO SUFFER
IN SILENCE AND THAT SAID
STILLBIRTH IS AN ISSUE WE CAN'T
SOLVE WITHOUT ACCURATE AND
TIMELY DATA AND TRUTH IS
STILLBIRTH IS NOT PRIORITIZED
FOR TIMELY RELEASE AND WHEN
AVAILABLE THERE ARE CONCERNS
ABOUT QUALITY AND EXAMPLE OF
INITIAL DATA FROM 2020 LIVE
BIRTHS BECAME AVAILABLE IN MAY
OF 2021 AND DIDN'T BECOME
AVAILABLE FOR STILLBIRTHS IN
AUGUST OF 2022 MAKING ABILITY TO
MAKE DATA DRIVEN DECISIONS
PREVENTION VIRTUALLY IMPOSSIBLE.
ALL IS NOT LOST MADE EFFORTS TO
IMPROVE LIVE BIRTH DATA CAN DO
FOR STILLBIRTH. WITH BETTER
DATA WE CAN HAVE BETTER OUTCOMES
AND RESEARCH ON STILLBIRTH HAS
NOT BEEN AFFORDED SAME ATTENTION
AS OTHER AREAS OF MEDICAL
RESEARCH AND SOME STUDIES
IDENTIFIED FACTORS CAUSING
STILLBIRTHS WE DON'T KNOW CAUSES
IN MAJORITY OF THEM IN PART LOW
AUTOPSY RATES LACK OF PROTOCOLS
FOR IDENTIFYING STILLBIRTHS
LEADS TO WORKFORCE CONCERNS
TRAINED PERINATAL PATHOLOGISTS
IN US TOO FEW TRAINED
PATHOLOGISTS NOT EVALUATED BY
AUTOPSY AND IF IT IS AUTOPSY
LEADS TO INACCURATE FINDINGS AND
WITHOUT EXAMINATIONS WE ARE
LIMITED IN UNDERSTANDING WHY SO
MANY HEALTHY PREGNANCIES RESULT
IN STILLBIRTH ABOVE LED TO
CREATION OF STILLBIRTH
PREVENTION AND EDUCATION FOR
AUTUMN ACT FOCUSING ON IMPROVING
DATA COLLECTION AWARENESS AND
REPORTING INFORMATION AND REMAIN
HOPEFUL AND OPTIMISTIC WE CAN
[INDISCERNIBLE] TO 118TH
CONGRESS THIS YEAR AND PROUD TO
SAY IT WAS FORMER CONGRESSWOMAN
THAT WORKED TIRELESSLY TO GAIR
TEE STILLBIRTH TAVK FORCING WAS
FUNDED TO BEGIN TO ADDRESS
STILLBIRTH CRISIS IN US SOONER
RATHER THAN LATER. ALL I HAVE
TO SAY IS THANK YOU AGAIN FOR
THIS OPPORTUNITY AND FOR JOINING
US TO ENSURE THIS ISSUE IS NO
LONGER NEGLECTED OR FORGOTTEN.
THANK YOU.
>> THANK YOU SO MUCH, DEB. I
KNOW THAT REPRESENTATIVE
[INDISCERNIBLE] AND HERRERA
BUTLER WERE SUCH CHAMPIONS
AROUND WILL MISS THEM GREATLY IN
THE NEXT CONGRESS AND THERE WILL
BE NEW CHAMPIONS WE HOPE TO WORK
WITH US TO ADVANCE THIS ISSUE.
THANK YOU FOR RAISING THAT.
MAY I SEE IF MEGAN -- I WILL TRY
THIS ONE. OKAT. I'M HOPING
THAT IS CORRECT. MEGAN, PLEASE
CORRECT ME.
>> YOU GOT IT. YUP. HELLO.
HI, EVERYBODY. I'M JUST PULLING
UP MY NOTES HERE. ALL RIGHT.
THANK YOU SO MUCH. I'M MEGAN
AND PROGRAM DIRECTOR WITH
HEALTHY BIRTHDAY INK.
PROGRAM COUNT THE KICKS YOU
HEARD ABOUT A BIT TODAY. THANK
YOU FOR ADVOCATES ON HERE
TALKING TODAY AND THANKS FOR ALL
BEING PART OF THE CRITICAL
CONVERSATION ALLOWING OUR VOICES
TO BE HEARD AND HOPEFULLY TAKE
WHAT YOU HEAR AND LEARN TODAY
AND TURN INTO ACTION. YOU HEARD
JASMINE AND COUPLE OTHER
ADVOCATES AND AMBASSADORS TALK
ABOUT COUNT THE KICKS WE WORKED
TO DECREASE STILLBIRTH RATE IN
IOWA BY 32% AND 39% OF AFRICA
AMERICAN HERE IN IOWA AND HOPE
TO BRING PROGRAM IN ALL 50
STATES AND REPLICATING SUCCESS
IN IOWA IN EVERY STATE ACROSS
THE NATION. WE WILL HAVE
POTENTIAL TO SAFE 7500 PAPE
BABIES FROM PREVENTABLE
STILLBIRTH YOU WON'T HEAR 100 PS
FORS ON WEBSITE OF BABIES THAT
HAVE BEEN SAVED AND WE KNOW
THERE ARE MORE OUT THERE WITH
COUNTLESS INFORMATION. YOU
WON'T HEAR HOW IOWA HASN'T HAD
INCREASE IN C SECTION RATES WITH
CREATION AND IMPLICATION OF
COUNT OF THE KICKS AND
STILLBIRTHS THAT HAPPENED
23,000 + SILVER STORIES THAT
TRAGICALLY HAPPEN EVERY YEAR AND
WON'T HEAR ABOUT ALL MOMS DYING
AFTER SUFFERING STILLBIRTH AS
YOU KNOW OR DIDN'T KNOW YOU ARE
4 TIMES MORE LIKELY TO DIE AFTER
SUFFERING A STILLBIRTH.
NOW, YOU WON'T HEAR ALL OF THE
STORIES TODAY.
WHAT I HOPE YOU DO HEAR IS THERE
IS ENOUGH EVIDENCE IN SUPPORT TO
PUSH FOR MORE FUNDING AND
SUPPORT FROM YOUR COLLEAGUES
FROM THE FEDERAL GOVERNMENT AND
YOU WILL HEAR AND WALK AWAY
KNOWING THERE ARE PEOPLE AND
ORGANIZATIONS HERE THAT WANT TO
FIX THE SYSTEM AND FEM YOU ARES
ALL ACROSS THE US CONTACT US ALL
THE TIME WITH STORIES OF LOSS
ASKING HOW WE GET PROVIDERS TO
LISTEN. ORGANIZATIONS LIKE A1
WORKING WITH US HAND IN HAND TO
GET STANDARD OF CARE MODEL
CREATED FOR THOSE COMING INTO
DEPARTMENTS WITH CHANGE IN FETAL
MOVEMENT AND WHAT TO DO WE ARE
HOOER WE CAN'T DO THIS ALONE OR
IN SILOS WE NEED YOU AND YOU
NEED US. THANK YOU.
>> MEGAN, THANKS SO MUCH AND
APPRECIATE YOUR COMMENTS.
I THINK EMILY PRICE IS NEXT ON
SPEAKER LIST AND THANK YOU ALL
FOR CONTINUING TO HOLD IN THIS
SPACE WITH US AND LISTENING TO
THESE STORIES.
WE REALLY DO VERY MUCH
APPRECIATE THEM. EMILY, ARE YOU
WITH US?
>> I AM. THANK YOU FOR YOUR
TIME. APPRECIATE IT. THANK YOU
FORALLOWING US TO SPEAK AND BE
HERE TODAY CEO OF HEALTHY
BIRTHDAY INC. WORKING ALONGSIDE
MEGAN AND JASMINE AND SHAWN AND
MANY OTHERS HERE TODAY CEO OF
HEALTHY BIRTHDAY INK NON-PROFIT
IN IOWA STARTING COUNT THE KICKS
STILLBIRTH PREVENTION PROGRAM.
NOTHING I SAY NOW WILL BE
IMPORTANT AS STORIES YOU HAVE
HEARD FROM FAMILIES ENDURING
TRAGEDY OF STILLBIRTHS ON CALL
AND SOMEONE WORKING IN
STILLBIRTH PREVENTION ENCOUNT
ERRED IGNORANCE IN THIS COUNTRY
AND CONVERSATION IN HEAD OF
MATERNAL CHILD HEALTH IN STATE
DEPARTMENT HERE IN US SHE ASKED
DIFFERENCE BETWEEN STILLBIRTH
AND MISCARRIAGE AND HEAD IN THAT
DEPARTMENT DIDN'T KNOW DTS
DIFFERENCE BETWEEN -- MATERNAL
AND -- STILLBIRTH IS NOT A
PRIORITY RIGHT NOW. SHE IS
RIGHT --
WE DEEPLY APPRECIATE YOUR TIME
AND LISTENING TO US YOU HAVE
POWER TO GET THOUSANDS MORE SAFE
LY -- THEY WERE VERY CLOSE TO
LOSING THEIR OWN LIVES AND MEGAN
MENTIONED RESEARCH SHOWS WHEN
SOMEONE GIVES BIRTH TO STILLBORN
BABY THEY ARE 4 TO 5 MORE TIMES
MORE LIKELY TO LOSE THEIR OWN
LIFE. STILLBORN EFFORTS EXIST
WE HAVE OPPORTUNITY TO SAVE MOMS
TOO. COUNT THE KICKS NOT ONLY
ALERTS MOMS TO EARLY RED FLAGS
WITH BABY IN THIRD TRIMESTER BUT
ALERTED THEM TO OWN HEALTH
ISSUES DEVELOPING LIKE MATERNAL
FETAL HEMORRHAGE OR PLACENTAL
ABRUPGS. MY FRIEND SHAWN COUNT
THE KICKS ARIZONA AMBASSADOR
TALKED ABOUT HOW SHE NEARLY DIED
AFTER DELIVERING HER SON ZACK.
SHE DIDN'T TELL YOU OUR SONS
WERE BORN THREE WEEKS APART TO
THE DAY IN JULY OF 2010. ONLY
DIFFERENCE I KNEW ABOUT COUNT
THE KICKS I LIVE IN A STATE
COUNT THE KICKS WAS CREATED AND
SPOKE UP WHEN I NOTICED CHANGE
IN SON'S MOVEMENTS IN 30 WEEKS
AND DOCTOR TOOK ME VERY
SERIOUSLY AND KNEW EVERYTHING TO
DO TO KEEP MY SON SAFE AND
INSIDE ME AND HE WAS DELIVERED
EXTREMELY HEALTHY FIRST DAY IN
4TH WEEK NOT ADMITTED TO NICU.
ONLY DIFFERENCE BETWEEN OUR
STORIES IS ONE OF US LIVED IN
COUNT THE KICKS STATE AND ONE
DOES NOT WHY DOES AMERICA ROLL
THE DICE WHO HAS IMPORTANT
STILLBIRTH INFORMATION AND WHO
DOES NOT YOU HAVE POWER TO SAVE
THIS LET'S STOP LEAVING BABY'S
LIVES UP TO CHANCE. WE DON'T
CARE WHO TAKES CREDIT WE CAN
SAVE LIVES RIGHT NOW MY SON AND
THOUSANDS OF OTHERS ARE LIVING
PROOF. THANK YOU FORYOUR TIME.
>> THANK YOU EMILY AND THANKS SO
MUCH.
I WILL CLOSE AND ASK TAMARA
NAPERSACK, ARE YOU WITH US
TODAY?
WE ARE RUNNING BEHIND. IT IS
POSSIBLE. I APOLOGIZE.
>> SHE DROPPED OFF.
>> I WILL REACH OUT TO HER.
FIRST, I WANT TO RECOGNIZE AND
ACKNOWLEDGE THE FACT THAT MANY
OF YOU HAVE BEEN WITH US THIS
WHOLE TIME.
I WANT TO THANK YOU SINCERELY.
THE PAIN AND GRIEF ARE SO VERY
REAL. AS A MOM AND AS A FRIEND
TO INDIVIDUALS WHO HAVE
DELIVERED STILLBORN BABIES, I
JUST WANT TO HONOR THE POWER AND
THE PAIN THAT YOU HAVE SHARED.
IT IS AN INCREDIBLY DIFFICULT
THING TO RELIVE TRAUMA AND
INCREDIBLY DIFFICULT THING TO
SHARE IT PUBLICLY AND DIFFICULT
THING TO SHARE SOMETHING THAT
CAUSED PAIN TO YOURSELVES AND
FAMILY AND MUSIC IN SOCIAL AND
FASCINATINGLY AMAZING WAY WE
HAVE HEARD YOU TODAY. WE HAVE
HEARD THE NEED TO PAY ATTENTION
TO EQUITY AND TO PAY ATTENTION
TO THE MENTAL HEALTH OF THE MOMS
AND FAMILIES WHO HAVE
EXPERIENCED STILLBIRTH AND PAY
ATTENTION TO NEEDS FOR AUTOPSY
AND FETAL AUTOPSY AND PAYING
ATTENTION TO FETAL MOVEMENT AND
NEEDS FOR IMAGING AND MEASURING
THE PLACENTA AND TRYING TO
DETERMINE HOW TO PREVENT
STILLBIRTH FOR OTHER FAMILIES
AND HOW WE NEED DATA FOR
RESEARCH AND THANK YOU FOR NOT
ONLY SHARING YOUR STORY BUT YOUR
KNOWLEDGE.
WE HOPE THAT AT LEAST WE CAN
BEGIN TO HONOR YOUR FAMILY'S
VOICES AND LOSSES AND
ACKNOWLEDGE THE POWER YOU HAVE
AS A COMMUNITY AND WE ARE GRATE
OFFUL FOR EVERYTHING YOU SHARED
WITH US TODAY.
WITH THAT, I WOULD LIKE TO ALSO
SAY THAT MY SINCERE CONDOLENCES
FOR ALL YOUR LOSSES.
I CANNOT IMAGINE THE PAIN THAT,
THAT HAS CAUSED BUT TRULY
APPRECIATE IT FROM THE BOTTOM OF
MY HEART.
WITH THAT, I WILL SAY THAT WE
WILL CONTINUE TO LISTEN. WE DO
ALSO STILL HAVE OPPORTUNITY FOR
SOME THAT MENTIONED A REQUEST
THAT IS OUT FOR MORE OF AN
OFFICIAL CHANNEL THAT IS DUE
TOMORROW. IF YOU HAVE NOT
SHARED THROUGH THAT, WE WOULD
REALLY APPRECIATE. WE ALSO
SHARED FOR THOSE THAT REGISTERED
IF YOU CAN'T MEET THAT DEADLINE
IT THAT YOU CAN REACH OUT TO
NATASHA WILLIAMS FROM
LEGISLATION AND PUBLIC POLICY
OFFICE AND WILL SHARE
PRELIMINARY REPORTS AND
RECOMMENDATIONS TO JANUARY 4TH,
2023 ADVISORY COUNCIL MEETING
AND YOU CAN GO TO THE WEBSITE
FOR MORE DETAILS ON THAT. I
WANT TO HOLD YOUR STORY WITH ME
TODAY. WE WILL CONTINUE TO HOLD
THEM IN THE WORKING GROUP.
THANKS SO MUCH ALL OF YOU FOR
JOINING US. WITH THAT, I THINK
WE WILL CLOSE.