>> 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 RENƒ 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.