NICHD Stillbirth Working Group of Council Public Listening Session Summary – January 5, 2023 | NICHD - Eunice Kennedy Shriver National Institute of Child Health and Human Development

Welcome and Overview

Alison Cernich, Ph.D., Deputy Director, NICHD

Dr. Cernich welcomed the participants and reviewed the logistics of the day.

Public Listening Session

Moderator

Alison Cernich, Ph.D.

Speakers

Susannah Leisher, Ph.D., M.Phil., M.Sc., M.A., representing the International Stillbirth Alliance, acknowledged the work of Debbie Haine Vijayvergiya, culminating in the passage of the federal Stillbirth Health Improvement and Education (SHINE) for Autumn Act, named in honor of Debbie’s stillborn daughter, Autumn Joy. The act is designed to improve data collection on stillbirths. Dr. Leisher described her own experience with the birth of her son Wilder, who was stillborn nearly 24 years ago, 11 days before his due date. Dr. Leisher said that despite doing everything right during her pregnancy, she became concerned when the baby stopped moving. She immediately went to the hospital, where an ultrasound could not detect a heartbeat. An autopsy and other tests did not reveal the cause of death, and Dr. Leisher was told that “sometimes these things just happen.” She has devoted her work to improving stillbirth research and offered the following points to help achieve that goal:

Use global metrics to acknowledge the poor performance of the United States on the global stage. The stillbirth rate is higher in the United States than it is in 25 other high-income countries.
Collaborate with global high performers, such as Australia, on reducing the risk of stillbirth; Ireland on national stillbirth bereavement, care, and standards; the Netherlands on parental involvement in perinatal audits; and Canada on extensive research approaches.
Redefine “preventable” using the 28-week definition. If the United States matched the lowest national stillbirth rate, which is Japan’s 1.4 stillbirths per 1,000 total births, 53% of stillbirths at this gestational age could potentially be prevented.
Acknowledge parents as experts in the production of research.
Focus research on un- and underinvestigated areas to uncover new risk factors and interactions. With stillbirths, 31% have no identified cause, and there are persistent racial disparities (e.g., Black families have at least double the risk of stillbirth that White families do) that must be addressed.
Prioritize timely and accurate data collection, such as improving birth certificate data to address the quality of fetal death certificates.

Samantha Banerjee is the executive director of PUSH for Empowered Pregnancy (PUSH), an organization whose mission is to reduce the incidence of preventable stillbirths in the United States. Her daughter, Alana, was stillborn 2 days before her due date after an uneventful pregnancy. Ms. Banerjee focused her comments on marginalized families and particularly Black parents who are bearing the brunt of the silent epidemic of preventable stillbirth, and she introduced Jaye Wilson, founder and CEO of Melinated Moms. Ms. Wilson said her daughter, Nyima Renee, was stillborn at 22 weeks because of placental abruption caused by severe preeclampsia. Ms. Wilson said that even though she is a nurse, her questions and concerns during her pregnancy were constantly dismissed or challenged. She described this dismissive attitude as a common experience for Black women, who feel that there is no point in saying anything, because nothing is going to change, and lauded Ms. Banerjee’s organization for creating a space to create the visibility and accountability that will be catalysts for change. Ms. Banerjee resumed the presentation, saying that closing the gap in disparities in pregnancy outcomes for White and Black parents would avert 4,000 stillbirths annually in the United States, a 17% overall reduction. The uniquely American stillbirth crisis—the United States has higher rates of stillbirths than nearly every low-, middle-, and high-income country worldwide, ranking 183 out of 190—exists because of racism and a collective inability to face death and grief. She noted since the NICHD Stillbirth Working Group (WG) of Council was established in September 2022, more than 7,000 U.S. babies have been stillborn. A large percentage of these stillbirths were preventable losses. Ms. Banerjee said that if the United States matched the stillbirth rate of Japan, where stillbirth is defined as beginning at 22 weeks, nearly 75% of U.S. stillborn deaths would be averted. The number of U.S. stillbirths is staggering, and the suffering caused by these deaths is unfathomable. She asked NICHD to consider stillbirth a public health crisis, not just a data collection problem, and to use its influence to end preventable stillbirth.

Tomeka James Isaac, the founder and executive director of Jace’s Journey, said that when she became pregnant with Jace at the age of 40, she was told had a high risk for preeclampsia. Despite this risk, she was given no urine tests and only one blood test, which was done on the first day of her third trimester. Subsequently, Jace presented with intrauterine growth restriction (IUGR). After an inconclusive ultrasound, no additional testing was done. The cause of the IUGR was never determined or mentioned. At 35 weeks, just 2 weeks before the planned delivery, Ms. Isaac rushed to the hospital after a bout of vomiting in the middle of the night and was told by hospital staff, emotionlessly, that Jace had died. She learned she had a syndrome that could have been diagnosed with a blood test. The severity of her life-threatening condition required seven surgeries over the next 45 days, forcing her to miss Jace’s funeral. One simple test could have saved Jace’s life, but urine protein testing is no longer considered a best practice because of how much time nurses must devote to it. Ms. Isaac said that Jace’s preventable death has forever changed her family. Each day 65 families are affected by a stillbirth, with Black women twice as likely to experience stillbirths. These deaths are preventable, and the time to start preventing them is now.

Marjorie Vail said that her loss occurred 18 years ago and that it is very sad to see families experiencing the same tragedy nearly 2 decades later. Ms. Vail said that during her stay at a birthing center in a Manhattan hospital, her requests for help went unheeded until it was too late. Her son was stillborn due to a cord insertion abnormality. The issue could have been detected with an extra sonogram, but that was not done because it was not standard of care. Had the sonogram been done, a cesarean section (C-section) could have been performed and her son would have lived. Ms. Vail said her charge to the committee is to make extra sonograms the standard of care so that conditions like cord insertion can be discovered, treated, and tracked.

Christian Ortiz said his daughter, Valentina, was stillborn at term a year ago at Christmas. Her death was preventable, as determined by reports from expert obstetricians and an autopsy. These reports were not offered to him; he paid thousands of dollars to independent experts to understand what happened to Valentina, both for closure and in the hope that her case could be studied for prevention purposes. Research is needed to understand how to prevent stillbirths, but there is a lack of clean autopsy data. Mr. Ortiz noted that there are 22,000 stillbirths per year that could be autopsied, but there is no funding for this type of research. When money is allocated to research aimed at stillbirth prevention, the number of these deaths will go down.

Yuvelca Magdalena Reyes is a full-spectrum birth and death doula and an ambassador for Count the Kicks, a system that uses an app to teach pregnant women how to monitor and track fetal movement during the third trimester by counting their babies’ kicks each day. Ms. Reyes said stillbirth is a traumatic event that should be acknowledged and treated with the support given to other emotional traumas. The trauma of stillbirth changes the brain, and these parents have a hard time moving on even years later. Ms. Reyes noted the disparate effect of stillbirth on Black women due to structural racism and asked NICHD to address the public health issue of too many preventable stillbirths occurring.

Katherine Hyde-Hensley recounted her experience after her daughter, Helen, was stillborn at 38 weeks in November 2006, 3 days before a scheduled C-section. She and her husband faced stigma, isolation, and feelings of failure. Ms. Hyde-Hensley endured severe postpartum depression, struggled to care for her other children, and found that little mental health support was available. The trauma affected her parenting, her family’s finances, and her and her husband’s careers. Today, as a licensed clinical mental health counselor, Ms. Hyde-Hensley asked the committee to consider the complex trauma that occurs after a stillbirth that impairs intimate relationships and emotional health and puts women at risk for long-term adverse social and psychological outcomes. She urged a paradigm shift toward systematic changes aimed at prevention, because stillbirths will only be reduced through research, education, and awareness campaigns.

Christine Chang said that at 38 weeks of an uneventful pregnancy she was told that her baby girl, Madison, had no heartbeat. Ms. Chang hemorrhaged as she delivered the placenta and awoke to find her husband holding their lifeless daughter in his arms. Over the following weeks and months, Ms. Chang, a healthcare professional, looked for answers. She knew that her baby’s fetal movements had changed toward the end of her pregnancy, but the nurses did not take that seriously. Five years later she learned that the baby’s placenta had been extremely small. Her subsequent pregnancies resulted in live births, but she wonders whether she had a small placenta with her other three pregnancies or whether her children will have similar problems. She experienced post-traumatic stress and postpartum anxiety after the births of her other children. Ms. Chang said that reducing the number of preventable stillbirths requires better data collection, more research, comprehensive education for parents and providers, and a willingness to listen to the parents who have experienced such losses.

Michelle Alette Harris, representing Elijah’s Purpose, was unable to attend. In Ms. Harris’s absence, Kenya Kirkman said that Elijah’s Purpose is an organization that provides resources (e.g., baby supplies, grief counseling, financial burial assistance) to families experiencing stillbirth or pregnancy loss. Ms. Harris was pregnant with twins in 2014 but was unable to access her Veterans insurance and get prenatal care until she was 28 weeks pregnant. At her first appointment, she was told that one of the twins, Elijah, had died about 3 weeks earlier. She carried the other twin to term and delivered both of her sons. She did not have the resources to provide for Elijah’s burial. In 2020, Ms. Harris founded Elijah’s Purpose. Ms. Kirkman said that she too had been pregnant with two boys, both stillborn in 2018, although she had been conscientious about prenatal care. She was told the cause was an incompetent cervix, although no cervical issues had been noted at her checkup 2 weeks earlier. The stillbirth has caused her great emotional distress. Ms. Kirkman noted that the rate of stillbirths in the United States is equivalent to losing a school bus full of children every day. Moreover, Black women are twice as likely to experience stillbirth as people of other races, and nearly 30% of stillbirths occur in Black families, even though Black people are only 13% of the population. The aftermath of a stillbirth is a place of loneliness, but there is an expectation that the bereaved family should just “move on.” Ms. Kirkman suggested that aftercare teams should be provided to parents to counsel them and provide them with resources following stillbirth. Detailed protocols for prevention are also needed.

Sebrena Tate said her daughter, Lily, was stillborn in 2020. Her cervix opened at the 20-week checkup. After Lily’s stillbirth, the doctors, saying that “these things happen,” told her that next time there were other things they could do to address her incompetent cervix. Ms. Tate suggested that rather than waiting until “next time,” routine cervical checks should be part of the standard of care. Families should not have to wait until they experience a loss to be told that the doctors will do things differently “next time.”

Katherine Cox said that hers was a high-risk pregnancy due to conception by in vitro fertilization (IVF) and controlled hypertension. Despite these risks, her pregnancy went well. She contracted COVID-19 at 30 weeks, and a blood clot was discovered on her cervix. She was hospitalized for observation for a number of days and then sent home. At 33 weeks a nonstress test (NST) was conducted, and Ms. Cox returned home. Less than 36 hours later, her son was dead. The cause of death was listed as unknown. However, Ms. Cox was subsequently diagnosed with antiphospholipid syndrome, which could have resulted in a placental infarction leading to her baby’s death. Ms. Cox questions why, with her high-risk pregnancy and a blood clot of unknown origin, she did not receive weekly double Doppler ultrasound or other additional testing. Today, 5 months and 6 days since her son’s death, Ms. Cox says she lives in a catatonic state and no longer sees friends or family. Stillbirth destroys lives and families. Ms. Cox said that she believed her son’s death was preventable, and she asked the WG to address stillbirth prevention as an urgent priority.

Angelica Kovach said her son was stillborn at 33 weeks because of several days of umbilical cord compression. Ms. Kovach, a nurse, realized while she was at work that she had not felt the baby move. She delayed care for 4 hours, not wishing to be a burden to her co-workers and also being aware of disparaging comments from hospital staff about overly anxious parents who seek help when everything is fine. Later that night, when she went to triage, her baby had been dead for a couple of hours. She still cannot understand how she could not have known he was fighting for his life inside her own body. In the 2 years since her baby’s death, Ms. Kovach has had countless parents tell her that all they wanted was for one person to validate their feelings of urgency and concern and to be welcomed by their provider when they wanted to check on their baby. She asked the committee to consider the following three noninvasive stopgap practices to prevent stillbirth losses while research is ongoing to provide more guidance:

Have parents establish their baby’s normal fetal movements using tools like Count the Kicks.
Have providers go beyond simply asking about the baby’s movements by assessing the adequacy of the fetal movement.
Modify prenatal education to make it clear that healthcare providers are there because of and for the patients and empower expectant parents to speak up when they have a concern about their baby.

Camila Caster said that after her own two uneventful pregnancies, she volunteered to be a surrogate for friends who were struggling with infertility. Her physician told her that an IVF pregnancy did not add risk, but Ms. Caster later learned that with IVF women are 4 times more at risk for stillbirth. Ms. Caster went to doctors trained in high-risk pregnancies and underwent extra sonograms and appointments. At 38 weeks she noticed that she had not gained weight, but the doctor was not concerned. Ms. Caster returned 5 days early for her 39-week appointment (which was her scheduled due date) because she had noticed reduced fetal movement. The doctor refused her request for a sonogram, saying her insurance would not cover it, but a normal Doppler was completed, and Ms. Caster was sent home to await her C-section 5 days later. Three days later she experienced vomiting and reduced fetal movement. She was given a prescription and told to wait for the delivery date. When she arrived at the hospital 2 days later with both her family members and the baby’s parents’ family members, she was told the baby had died. She was left alone in a room for 3 hours, hearing the cries of both grief-stricken families in the next room. She endured the C-section and was told by the doctor that this was a very rare occurrence. Ms. Caster said she now knows that every day 65 mothers will wake up with a dead child in their womb. The baby’s parents, whom she was trying to help, felt extreme guilt, stopped speaking to Ms. Caster, and tried to sue her. Now, a year later, Ms. Caster is still dealing with the trauma and going to therapy every day. Ms. Caster said providers are not fully educated about teaching parents to track fetal movements or how to deal with parents after a stillbirth. Ms. Caster said she was treated as if the stillbirth had been her fault, and it turned something wonderful into the worst experience of her life. She asked the committee to treat stillbirth prevention with the national urgency it deserves.

Ana Vick said her son, Owen Nathaniel, was stillborn 7 years ago. When Ms. Vick reported feeling weak during her third trimester, her concerns were swept aside, and she now wonders whether an extra ultrasound would have shown what she later learned was cord compression. She was never told about fetal movement, but having read about it, she started kick counting and felt that her son was not responding well. Concerned, she left her husband with their daughter and went to the hospital, where she was told Owen’s heartbeat was crashing and they needed to take him out. Joshua Vick recalled how he raced to the hospital, arriving at his wife’s room before the doctor, and being sent to the waiting room. Mr. Vick was soon to be told that his son had died. He was holding his lifeless son when his wife awoke and had to tell her that Owen had died, which was like living the nightmare twice. The Vicks were determined to find the cause of death, but the doctors discouraged an autopsy, citing the cost and the possibility that it would be inconclusive. However, 6 years later, placental pathology showed that Owen died of cord compression, and the Vicks are working to make sure his cause of death is updated. They suggest that parents should not be responsible for insisting on and paying for an autopsy but rather that autopsies should be standard in cases of stillbirths. Everyone deserves to know why their child died.

Meredith McLeod-Cobb, representing Oliver’s Way, said that although she had a very experienced medical team, her son Oliver’s death was due to an incorrect interpretation of an NST (i.e., incorrect baseline reading), leading the doctors to dismiss her concerns about Oliver’s reduced fetal movement that was followed by frantic movements. After Oliver’s death, the family was forced to initiate its own investigations, including an autopsy with placental and neurological pathology, with no help from the hospital. Given Ms. McLeod-Cobb’s many risk factors for stillbirth (fibroids, cervical dilation, history of gestational hypertension), doctors should have been aware of hypercoiling and marginal insertion of the cord into the placenta. Although all signs pointed to an impending stillbirth, no one discussed it. Ms. McLeod-Cobb said that physician attitudes clearly affect stillbirth outcomes, noting that maternal death in the hospital triggers an investigation, while stillbirth is treated as simply a tragic outcome. Oliver would have lived if he had been delivered when his mother presented at the doctor’s office with her concerns about his fetal movement and ongoing contractions. After Oliver’s death, the family moved to a state with better care, spent thousands on grief therapy for all family members, and invested in personalized care for a subsequent pregnancy. Ms. McLeod-Cobb asked the committee to consider the following interventions to help prevent stillbirth:

Fund research to create a risk profile in all pregnancies for stillbirth and maternal death so that the relative risks are tracked as new events occur in the pregnancy. The risk score should be at the top of the chart so that everyone involved is aware of the risks.
Create a third-party stillbirth oversight committee and a ground team, independent of the hospital management or physicians involved in the care, to manage the investigation of all stillbirths and help compile accurate records of cause of death.
Create a right, covered by insurance, for women to get a second opinion with a higher-level provider.
Require all obstetricians and gynecologists to undergo yearly NST certification.
Require financial remuneration of all autopsies in stillbirth, so that the cause of death can be determined and the data used to help prevent future stillbirths.

Jasmine Abraham, an ambassador for Count the Kicks, noted the 32% stillbirth reduction rate in Iowa between 2008 and 2018, with Iowa’s African American stillbirth rate decreasing by 39% in the first 5 years of the program. The difference between the progress in Iowa (stillbirth rate going down 1% every 3 months) and that of the United States in general (stillbirth rate going down 0.8% per year) is striking. Ms. Abraham said she learned about Count the Kicks too late; her doctor said her baby was so active that she did not need to worry his movements. Her son, Clawson, was stillborn at 37 weeks. Ms. Abraham said that more than half of mothers who experience a stillbirth notice a change in their baby’s movements before the baby dies, and she cited the need to educate patients and providers about the importance of monitoring each baby’s specific fetal movements.

Allie Felker, director of policy at PUSH, said her son, Hank, was stillborn in 2020. The day before he died, Ms. Felker went to the doctor, concerned about reduced fetal movement. She underwent an ultrasound during which the technician had her jump up and down while counting the changes in Hank’s foot position, an incorrect procedure. After Hank’s birth, Ms. Felker’s provider said simply, “These things happen.” A cause of death for Hank was never filed, but Ms. Felker said his death could have been prevented had her pregnancy been given the correct standard of care. She had done the right thing by going to the doctor to report reduced fetal movement, and her provider made the wrong decision. Ms. Felker warned against a system of paternalism among providers. She asked three things:

That providers be more aware of their own practices and identify their own racism and/or paternalism
That NIH consider ways to build a successful information campaign, as it has done with Sudden Infant Death Syndrome (SIDS), to increase the awareness and prevention of stillbirths
That the NICHD WG report make it clear to policymakers that the system of data collection for stillbirths must be improved

Bobbie Cohlan said her grandson, Oliver Cohlan Hughes, was stillborn on January 25, 2013. Two days earlier, Ms. Cohlan’s daughter had told her that Oliver was moving less. The next day, at her 35-week checkup, her daughter told the doctor about the baby’s reduced movements, and the doctor said, erroneously, “Babies don’t move so much in the last trimester.” An ultrasound at this appointment detected no heartbeat, and Oliver was born still the next morning. Ms. Cohlan said her daughter should have been told about tracking the baby’s movements. An autopsy, paid for by the hospital, found that the cause of death was fetal-maternal hemorrhage (FMH). The number of stillbirths in the United States, about 23,000 per year, has not changed in years. Ms. Cohlan asked the NICHD WG to address the “silent epidemic of stillbirth” by facilitating funding for research on the causes of stillbirth, such as FMH, and highlighting the need for autopsies and placental review to provide more data that will lead to a reduction in the incidence of preventable stillbirths.

Shawn Soumilas said her son Zachary was stillborn in 2010 at full term after an uneventful pregnancy during which she did everything right and did not exhibit any of the health risks for stillbirth. Although she had noticed a decrease in Zach’s movements 2 days before his birth, her provider dismissed that as just the baby “settling down for birth.” Ms. Soumilas lost considerable blood volume, nearly died after the birth, and was given just a 20% chance of survival. She continues to face significant health issues. Ms. Soumilas is now an ambassador for Count the Kicks and a member of the Child Health Translational Research team at Arizona State University, and she is working with the Arizona Department of Health Services to write the state’s Fetal-Infant Mortality Action Plan. She called on NIH to fund more stillbirth research, provide clear information about kicks and fetal movement, listen to the lived experience of stillbirth families to identify effective stillbirth prevention initiatives, and focus on implementing a national stillbirth data collection system, an approach that has helped reduce the number of stillbirths in other countries.

Alex Abend said her son James was stillborn at 34 weeks. She had gestational hypertension. At her 34-week checkup, James’ heartbeat was slow, and Ms. Abend was sent directly to the hospital, where James was found to have no heartbeat. She delivered by C-section 9 hours later. A week later she was readmitted with postpartum preeclampsia and high blood pressure. James was found to have died from a marginal insertion of the cord, which was seen at the 20-week anatomy scan, and a kink in the cord. Now 19 weeks pregnant with her second child, Ms. Abend still struggles with flashbacks, stress, and grief. She spoke at this meeting because it is unacceptable that women’s pregnancy outcomes are given so little consideration in the United States and the causes of stillbirth are not a top priority in a country with such vast scientific resources. She asked the NICHD WG to increase stillbirth research and elevate the standard of care around pregnancies.

Ann O’Neill, Ph.D., M.S., director of Measure the Placenta, said that the organization’s single goal is to have placenta size measured during pregnancy as a risk factor for poor outcomes. Dr. O’Neill’s son, Elijah David, was stillborn on his due date in July 2018 after an uneventful pregnancy. Although his cause of death was listed as “unknown,” she later learned that while her son was a big baby in the 80th percentile, his placenta size was less than the third percentile. Dr. O’Neill discovered a research study from 2012 showing that the probability of stillbirth increases with low placental weight z-scores, independent of birth weight. Numerous other papers also linked abnormal placenta size to poor birth outcomes. Dr. O’Neill described the work of Harvey Kliman, M.D., Ph.D., the inventor of a simple placenta measurement called estimated placental volume (EPV) that requires only a standard ultrasound. She said that EVP measurement should be a standard of prenatal care. Dr. O’Neill called on NICHD to fund a large prospective study on EPV to address this significant research gap and get this risk factor accounted for during pregnancy.

Laura Drake said her daughter was stillborn 2 years ago after prolonged induced labor. The impact of the loss was devastating to her mental health. Ms. Drake said she was neither well informed about fetal movement during the pregnancy nor educated about the frantic movement, which did occur. The cause of death was found to be FMH. Ms. Drake and her husband had limited precious time with their daughter after her birth before she was taken for an autopsy. Ms. Drake’s placenta did not detach, and she had emergency surgery, requiring blood transfusions, that left scarring that makes it unlikely that she could carry another pregnancy. She urged action to save babies who are dying preventable deaths.

Elaina Vietz said her son, Dylan, was stillborn 8 years ago after a normal, healthy pregnancy. Expensive testing undertaken after he died revealed no cause for the placental abruption that occurred. Ms. Vietz had seen the doctor the day before Dylan died, presenting with cramps and discomfort. After 2 hours of monitoring Dylan’s heart and finding it normal, the doctor sent Ms. Vietz home; Dylan died 12 hours later. Ms. Vietz said she spoke today as part of the PUSH organization and called for an increase in research to understand why stillbirths occur, particularly as related to complications with the placenta.

Rachel Unkovic said her daughter, Ruthie Mae, was stillborn at 37.5 weeks in 2020. The baby was named after her great-grandmother, who had just died of pancreatic cancer. Ruthie Mae’s death was attributed to repeated cord compressions, an expensive diagnosis that the family paid to have made. Ms. Unkovic had told the doctors about Ruthie Mae’s reduced movements 2 weeks earlier, but they dismissed the change as a normal occurrence. Ms. Unkovic said she blames the lack of funding for meaningful research, the lack of stopgap safety measures while research is being conducted, the broken system that trains doctors with incorrect information, and the profit-based medical system that rewards doctors for speed rather than quality of care. Ms. Unkovic’s C-section never healed correctly, and she required corrective laparoscopic surgery to restore fertility. She is now pregnant with Ruthie Mae’s little brother and is beset with anxiety about the baby’s movements.

Marny Smith said her son, Heath, who was stillborn in 2019, would have been 3 years old on this day. She emphasized the power of NIH and its success in saving babies, referencing the work of Marian Willinger, Ph.D., and the Safe to Sleep® campaign, and the fact that the rate of SIDS deaths has gone down by 50% in 15 years. She implored the WG to demand the research and resources that will drive stillbirth prevention through implementation science. She asked the WG members, who are highly esteemed professionals with incredible privilege and power, to use their influence and power to be healing voices to stem a stillbirth epidemic fueled by racism, complacency, fatalism, poverty, and injustice and to help prevent 23,000 babies from being stillborn every year.

Domenique Rice addressed the WG members, reminding them that they have spent the past hours in a sacred space with the parents of stillborn babies. She and all of these parents live this experience every minute of the day and are entrusting their hearts and missing children to the WG members to implement much-needed change. She acknowledged the emotional toll of hearing so many stories of loss but urged members not to look away. She believes that her son, TJ, suffered a preventable death. The educational discrepancies among practitioners must be addressed. The solutions must be equitable and address Black families. She called on the WG to look at all factors, not just traditional factors that are rooted in racism. She invited members to walk hand in hand with those who have experienced stillbirth loss, because they are the ones who live their children’s deaths every day and have educated themselves to try and save others. She asked the WG to partner with these parents and provide equitable research and resources.

Rosemary Fournier represented the National Center for Fatality Review and Prevention, which is a federally funded data and resource center that supports child death review and fetal and infant mortality review (FIMR) programs across the country. She offered her condolences to all the participants and said that she admired their courage in bringing their experiences forward. She discussed the FIMR program, noting that each year 21,000 infants who are born alive die before their first birthday, and there is an equal number of stillbirths. The FIMR program provides multidisciplinary teams to examine these deaths, with the goal of learning how to prevent them. FIMR focuses on systems issues, not personal blame, and many parents who are interviewed speak of the need for more data, which FIMR strives to provide. FIMR, which currently operates in 26 states and the District of Columbia, makes recommendations focused on prevention and informed by the voices of those who have lost an infant. Ms. Fournier, a registered nurse, said FIMR findings have spurred communities to enhance their bereavement and support services for families, get a clearer understanding of underlying risk factors and inequities, and embrace evidence-based prevention efforts such as Count the Kicks.

Amanda Feltmann said she was angry about her daughter Jennifer’s preventable death. She had trained as a stillbirth photographer but was not aware of the need to monitor fetal movements. When ultrasound found her daughter to be small, Ms. Feltman was sent for weekly and then twice-weekly NSTs and biophysical profiles. After Jennifer’s death, the doctors discouraged Ms. Feltmann’s questions, pointing out that she had had very intense care. When she later learned about EPV, she wondered whether that would have prevented Jennifer’s death. She has since delivered a second daughter alive but found her maternal-fetal medical specialists unwilling to entertain EPV testing, saying they did not know how to do it and calling it unnecessary. Ms. Feltmann has become an advocate on Instagram, sharing information about the grief experience, the need to monitor fetal movements, and the importance of measuring the placenta. She returned to photographing stillborn babies, noting that her latest pictures were of a baby boy whose mother reported reduced movements to her doctor, but nothing was done. Ms. Feltmann said the system is not working. Improvements are needed in the standard of care to ensure that she stops getting calls to photograph babies who have died.

Kelly Friedrich said her son, William James, was stillborn in 2021 at 36 weeks after a normal pregnancy. Early one morning Ms. Friedrich realized she had not felt Will move in a while and went straight to the doctor. There was no heartbeat, and Ms. Friedrich and her husband returned home to await plans for her to deliver a dead baby. After his birth, she held her perfect baby and was then discharged to home not knowing the cause of Will’s death. After an expensive autopsy, the Friedrichs consulted with an EPV specialist and learned that Will’s placenta was in a low percentile for his weight. Ms. Friedrich believes Will’s death could have been prevented if the placenta had been measured during pregnancy and she had been educated on counting kicks to know Will’s normal movement pattern. She asked the WG to change the trajectory of stillbirth in the United States.

Debbie Haine Vijayvergiya said that the stillbirth of her daughter, Autumn Joy, in 2011 irrevocably changed her life. Bringing a lifeless child into the world changes a person fundamentally, and Ms. Vijayvergiya has spent the last decade working to shine a light on the stillbirth crisis in the United States. Stillbirth is one of the most common adverse pregnancy outcomes in the United States; since Autumn died, 260,000 babies have been born still in this country. Yet stillbirth, which destroys families, friendships, and careers, remains one of the most understudied and underfunded public health issues. Ms. Vijayvergiya cited the lack of prioritization for collecting and releasing accurate stillbirth data, the lack of research on stillbirth, and the shortage of trained perinatal pathologists as areas that need immediate attention, and she expressed hope that the SHINE for Autumn Act of 2021, which addresses stillbirth data collection issues, will be enacted by the current Congress.

Megan Aucutt, program director of Healthy Birth Day, Inc., the Iowa-based nonprofit organization that created the Count the Kicks stillbirth prevention program, said work is ongoing to bring Count the Kicks to all 50 states. If every state replicated Iowa’s success, 7,500 babies could potentially be saved from preventable stillbirth each year. She noted that women are 4 times more likely to die after having a stillbirth. Addressing the stillbirth crisis requires multiple organizations—along with state, local, and federal governments—to work together to fix the system and develop a standard of care that is effective in preventing stillbirths. She urged the WG to help make these partnerships a reality.

Emily Price, CEO of Healthy Birth Day, Inc., said there is still a learning curve for health professionals, some of whom do not know the difference between miscarriage and stillbirth. She noted that nothing she could say at this meeting would be as important as the parents’ stories that had been told. Recently, as she was speaking with congressional staffers about the status of the Maternal and Child Health Stillbirth Prevention Act, Ms. Price was told, “Stillbirth just isn’t a priority right now.” The staffer was right: It isn’t. But it must become one, and the WG has the power to begin to make it a priority. Ms. Price noted that many women not only endure losing their baby to stillbirth but also come close to losing their own lives from complications of stillbirth. Ms. Price said she was counting kicks during her own pregnancy in 2010 when she noticed a change in her son’s movements. Her doctor took her concerns seriously and took measures to ensure her son was safely delivered at 40 weeks. The United States can no longer roll the dice on stillbirth prevention in some states but not others. Ms. Price urged the WG to wage a stillbirth prevention campaign, similar to what was done to reduce the risk of SIDS, and come together with her organization and others to raise awareness about proven prevention efforts. She also encouraged NIH to consider a large-scale study of Count the Kicks across the United States.

After the meeting concluded, the following two testimonials were received:

Elizabeth Smith said her daughter, Callie, was stillborn in 2020 at 36 weeks. At her 35-week checkup, Ms. Smith told her doctor that she had not felt distinct fetal movement for the previous 3 days. At that visit, Ms. Smith was not informed that her blood pressure was elevated and was instead advised that babies move less because they run out of space (false) and to look for 10 movements in 2 hours (inaccurate and outdated). At her 36-week checkup, Ms. Smith was told that her daughter was dead. Ms. Smith was persuaded not to have an autopsy performed, because it was unlikely to be dispositive. Later, after joining PUSH and learning about perinatal pathology, Ms. Smith discovered that she had had a large placenta and experienced FMH. Ms. Smith wonders whether her daughter would have lived had Ms. Smith been sent to the hospital for tests when she reported reduced fetal movements. After the birth, Ms. Smith felt alone with her grief and brushed aside, as if she should just go have another baby. She entered therapy, but it took almost 2 years to find the support from PUSH that has been so helpful. Ms. Smith asked for research into the causes of stillbirth; better data collection from those who have experienced stillbirth; clearer provider guidelines on measuring the placenta, widespread fetal movement awareness, and monitoring; and resources to help grieving parents.

Fernanda Sheridan said her daughter, Natalie, was stillborn at 38 weeks in 2018. Ms. Sheridan informed her doctor about frantic fetal movement followed by reduced movement but was told not to worry. That night she went into labor and found that Natalie had died. She asked that NICHD partner with parents and advocates to decrease stillbirths by improving data collection and implementing changes in the standard of care that include understanding fetal movement and having providers be receptive to taking expectant families’ concerns seriously. Stillbirth affects more than 588 out of 100,000 births, which is not the definition of rare. Ms. Sheridan noted that NICHD helped form the Stillbirth Collaborative Research Network to study the scope and causes of stillbirth from 2006 to 2011, yet stillbirth deaths occur at the same level today. She wondered how those research funds were used and suggested that NIH should not need or wait for pressure from the media to act on this crisis.

Wrap-Up

Alison Cernich, Ph.D.

Dr. Cernich thanked all the speakers. She acknowledged their pain and grief and honored the power of their stories and the courage it took to share them publicly in order to help others. She assured the participants that NICHD heard them, appreciates their knowledge, and understands the need to pay attention to equity, the need to address mental health issues, the need for autopsies, the importance of fetal movement, the benefit of measuring the placenta, and the need for more data and research on stillbirth prevention to spare other families such trauma. Dr. Cernich offered her sincerest condolences to the families and said that NICHD will continue to listen and will share preliminary reports and recommendations at the January 24 National Advisory Child Health and Human Development Council meeting.