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May 26, 2023: Elizabeth O’Donnell found out she was pregnant in June 2020. It came as a surprise, but she was so happy. She was never sick and says that she was healthier than ever.
But around Thanksgiving, her daughter, whom she already planned to name Aaliyah, was moving around a bit more than usual. Then, on November 28, 7 months pregnant, the unthinkable happened.
“I realized I hadn’t really felt her move all day so it took a little while for me to feel like she was okay, I’m going to the hospital because I really thought she was bothering me for the first time. mother. Everything had been so good up until then, why would there be something wrong? she remembered.
Her doula encouraged her to go to the hospital. When she got there, her midwife couldn’t find a heartbeat.
“At that point, when he told me that my daughter no longer had a heartbeat, I said, ‘What are you talking about?’” O’Donnell said. “This still happens? Is this ‘a thing’? I thought things like this only happened, I think I said in the 19th century, because I was like, ‘what do you mean you can’t find a heartbeat?’”
Everything had gone perfectly up to that point, he said.
“So to be told your child is dead, and by the way, you still have to go through a full labor like it was, you know, coming out crying was so hard, and it’s hard to put into words. because you never expect that you have to do something like that.”
Aaliyah Denise Briscoe was born 4 days later, on December 1, 2020. But O’Donnell’s trauma didn’t end there. Her employer then also denied her paid maternity leave.
“They told me my family license was going to be revoked because I couldn’t provide a birth certificate even though it had been pre-approved.”
The Washington, DC, schoolteacher, then 30, decided to fight back. She went public with her story, posting a photo of herself holding Aaliyah from her hospital bed on her Instagram. Went viral.
“It shouldn’t matter if Aaliyah breathed or not, you know, me as a mom, I still went through everything everyone else goes through in terms of labor and delivery.”
“All I wanted,” she continued, “was 8 weeks to not go to work bleeding every day or go to work trying to figure out what to do with this coming milk. I mean, I couldn’t go to work.”
Disgusted and disillusioned, she stopped teaching and immediately began advocating for parents of stillborn children. Aaliyah in Action was born.
The nonprofit organization offers “personal care” packages as a first step toward healing for birthing parents and families.
“I wanted to give a small piece of something to help families get through the worst time in their lives when they don’t want to get ahead,” O’Donnell recalled. “I think people’s first reaction is to just push resources at you. And while that’s nice, the first week or two not everyone is ready for that. For me, I wasn’t ready for that, but it’s helpful to have these resources when you’re ready.”
O’Donnell wanted to make sure others had the same access.
“It’s a very, very difficult life every day, but if we can have a lot of resources, and different kinds of resources, then hopefully people will be able to figure out what works best for them.”
The packages are helping struggling families in 40 states navigate life after such a devastating loss. They are also providing grief resources and books for parents and siblings, and have partnered with doulas, birthing centers and nearly 40 hospitals to help distribute them.
O’Donnell even worked with the DC City Council to expand bereavement leave for employees who lose a child. The District Government Parental Bereavement Leave Amendment Act of 2022 provides 10 days of paid leave when an employee “suffers a stillbirth.” It became law on March 10.
According to Vasu Reddy, senior policy adviser for economic justice at the National Association for Women and Families, one of the problems is that the Family and Medical Leave Act of 1993 is unclear about coverage for miscarriage or stillbirth.
“When it’s not explicit, it’s up to employers and HR to interpret what is explicit to the best of their ability, Reddy said. “So there could be a lot of confusion between employers and employees about whether this is covered because it’s not explicit. Implicitly, however, in most cases, miscarriage and stillbirth would be covered.”
Reddy believes that because employers don’t necessarily think of this as a health issue, it gets overlooked and many people are denied as a result.
She says FMLA is a floor, not a ceiling, so it sets the baseline minimum protections, but states can go beyond those protections to make sure people get the time off they need.
“I think employers and human resources departments are often oriented towards the bare minimum that the law says we have to do, and let’s do it,” he said.
Reddy believes that women who have been denied paid sick leave after giving birth to a stillbirth should make it very clear what their health and medical needs are in order to recover physically and emotionally.
Each year, at least 21,000 babies are stillborn in the United States. That’s about 1 in 175 births, according to the CDC.
The Star Legacy Foundation says the stillbirth rate in the US has stayed the same for several decades and is higher than in many other industrialized countries.
Foundation founder and CEO Lindsey Wimmer’s son, Garrett, was stillborn at 38 weeks, then considered full term, nearly 20 years ago.
“I tried to understand what had happened to us from that medical perspective because there were so many unanswered questions, and that’s when I realized how little research had been done, how many gaps there were, and that there really wasn’t care. get paid for this issue,” Wimmer said.
The former nurse practitioner says the bottom line is that in the US, stillbirth has not become a priority.
“We have a lot of work to do, and we have to do it because where we are right now is not right,” Wimmer said. “And I would say that we are definitely falling behind our colleagues and our counterparts in other high-income countries around the world who are really making stillbirth prevention a priority.”
Some stillbirths can be caused by infections, birth defects, and other complications of pregnancy. According to the March of Dimes, the most common symptom is if the baby stops kicking and moving.
Black women are more than twice as likely to have a stillbirth as Hispanic or white women. Women 35 and older and women in the lowest income levels are also at higher risk.
Elizabeth Cherot, MD, senior vice president and chief health and medical officer for the March of Dimes, wants women to know that while there are some risk factors that cannot be changed, there are others that something can be done about.
“Getting a preconception checkup, for example, helps identify medical conditions you have that may increase your chances of stillbirth,” Cherot said. “This is an important step for anyone thinking about getting pregnant.”
Other tips: Maintain a healthy weight and avoid drugs, tobacco and alcohol. See a doctor immediately if you experience bleeding during pregnancy.
Christopher M. Zahn, MD, acting executive director and chief of clinical practice and health equity and quality at the American College of Obstetricians and Gynecologists, says the reason for most stillbirths is still largely unknown.
“The study of specific causes of stillbirth has been hampered by a lack of uniform protocols for evaluating and classifying stillbirths and by declining autopsy rates,” Zahn said. “In most cases, stillbirth certificates are completed before a full postnatal investigation has been completed and amended death certificates are rarely submitted when additional information emerges from the stillbirth assessment.”
He says more data and research is needed. His organization “believes that stillbirth prevention is a widely shared responsibility and has worked to raise awareness among policymakers and stakeholders about stillbirth in the US, the racial and ethnic disparities that exist, and the need for for more research.”
The March of Dimes has launched a new center that will investigate and address the poor health outcomes and long-standing racial disparities that they say make the US one of the most dangerous developed nations in which to give birth.
“The center will focus solely on research aimed at closing the health equity gap in maternal and child health outcomes through scientific research and technological development,” Cherot said.
And last year, following a request from Congress, a group of experts met to discuss stillbirth. In March, the National Institute of Child Health and Human Development’s Task Force on Stillbirths at the National Institutes of Health released a report that focused on barriers to collecting data on stillbirths, communities most at risk, the psychological impact and treatment for mothers after stillbirth, and known risk factors.
They recommended improving record keeping and data collection; address disparities in risk; and reduce the stillbirth rate in the US through research and prevention efforts.
O’Donnell took action into her own hands and hired a Yale placental pathologist to help determine Aaliyah’s cause of death. She had outgrown the placenta from her.
And he’s working to expand Aaliyah into action to help fill the gaps he sees in the system.
“No one should walk into a hospital pregnant and then come out empty-armed. Especially if it can be prevented. Not all stillbirths can be prevented, but many, many can. And we can change this and I’m here to do that.”
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