May 26, 2023 — Elizabeth O’Donnell found out she was pregnant in June 2020. She was surprised, but very happy. She says she never fell ill and that it was the best she’s ever felt.
Around Thanksgiving, however, her daughter Aaliyah (whom she had already decided to name) was moving more than usual. On Nov. 28, seven months into her pregnancy the unthinkable occurred.
“I realized I haven’t really felt her move all day, and so it took me a little while to feel like ‘OK, I’m going to the hospital,’ because I really just thought I was being an annoying first-time mom. Everything had been so great up until then, why would there be something wrong?” she recalled.
Her doula encouraged the woman to go to hospital. When she got there, her midwife couldn’t find a heartbeat.
“In that moment when she told me that my daughter no longer had a heartbeat I was like, ‘What are you talking about?’” O’Donnell said. “This still happens? This is ‘a thing’? I thought stuff like this only happens, I think I said in the 1800s, because I was just like, ‘what do you mean you can’t find a heartbeat?’”
The woman said, “Everything had gone perfectly until that point.”
“And so, to be told your child is dead and by the way you still have to go through a full delivery as if she was, you know, going to come out crying was just so hard, and it’s hard to put it into words because you just never expect that you have to do something like that.”
Aaliyah Briscoe was conceived 4 days later, on December 1, 2020. O’Donnell’s trauma did not end there. Her employer also denied her paid leave for maternity.
“I was told that my family leave was going to be revoked because I could not provide a birth certificate even though it was previously approved.”
The Washington, DC, Washington, DC, then-30-year old teacher decided to fight. She shared her story on Instagram, where she posted a photo of her holding Aaliyah in her hospital bed. It became viral.
“It shouldn’t matter if Aaliyah took a breath or not, you know, me as a mother, I still went through everything that everyone else endures in terms of labor and delivery.”
“All I wanted,” she continued, “Was 8 weeks so that I wouldn’t go to work bleeding every day or going to work trying to figure out what do I do with this milk that’s coming. I mean, I could not go to work.”
She quit teaching immediately after becoming disillusioned and angry. She began to advocate for the parents of stillborn babies. Aaliyah in Action began.
The nonprofit organization provides “self-care” packages as a first step toward healing for birthing parents and families.
“I wanted to just give a tiny piece of something to help families get through just the worst time of your life when you don’t want to make it through,” O’Donnell recalled. “I think people’s first reaction is to just shove resources at you. And while that’s good, the first week or two not everyone is ready for that. For me, I was not ready for that, but it’s helpful to still have these resources when you are ready.”
O’Donnell wanted to make sure others had the same access.
“It’s a really, really tough life every day, but if we can have a plethora of resources — and different types of resources — than hopefully people will be able to figure out what works best for them.”
The packages assist families who are struggling to cope after a tragic loss in 40 states. The packages also include books and bereavement materials for parents and their children. Doulas, birthing centres, and almost 40 hospitals are partnering with them to distribute these resources.
O’Donnell even worked with the DC City Council to expand bereavement leave for employees that 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 March 10.
According to Vasu Reddy, senior policy counsel for economic justice at the National Partnership for Women & Families, one of the issues is that the Family and Medical Leave Act of 1993 is not clear about covering miscarriage or stillbirth.
“When it’s not explicit, then it’s down to employers and HR to interpret what is explicit based on, you know, to the best of their ability, Reddy said. “And so there very much could be confusion between employers and employees about whether this is covered because it’s not explicit. Implicitly, though, in most cases miscarriage and stillborn birth would be covered.”
Reddy believes that because employers don’t necessarily think of this as health issue, it slips through the cracks and a lot of people get denied as a result.
She says that FMLA is not a ceiling but a floor. It sets the minimum protections for employees, but the states can go further to ensure they get the time away they need.
“I think that employers and HR departments are often oriented toward what’s the minimum that the law says we have to do, and let’s do that,” she said.
Reddy says women who are denied paid medical leave following the delivery of a stillborn baby need to be very clear about their health and medical needs in order to recover physically and emotionally.
At least 21,000 stillborn babies are born in the United States every year. That’s about 1 in every 175 births, according to the CDC.
According to the Star Legacy Foundation, the U.S. stillbirth rate has been the same for many decades and is higher that in other industrialized nations.
The foundation’s founder and executive director 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 just so many unanswered questions, and that was when I realized how little research had been done, how many gaps there were, and that there just really was no attention being paid to this issue,” Wimmer said.
Former nurse practitioner claims that stillbirth is not a top priority in the United States.
“We have a lot of work to do, and we need to be doing it because where we’re at right now is not OK,” Wimmer said. “And I would say 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 may be caused by infection, birth defects and other pregnancy complications. According to March of Dimes the most common sign is when the baby stops moving and kicking.
Black women are twice as likely to experience a stillbirth than Hispanics or whites. Women in the lower income brackets and women over 35 are at greater risk.
Elizabeth Cherot, MD, senior vice president and chief medical and health officer at March of Dimes, wants women to know that while there are some risk factors you can’t change, there are others you can do something about.
“Getting a preconception checkup, for example, helps identify medical conditions you have that can increase your chances of stillbirth,” Cherot said. “This is an important step for anyone thinking of getting pregnant.”
Other tips include: Avoid drugs, alcohol and tobacco. Consult a physician immediately if you have bleeding during pregnancy.
Christopher M. Zahn MD, interim CEO and Chief of Clinical Practice and Health Equity and Quality at the American College of Obstetricians and Gynecologists says that the cause of most stillbirths remains largely unknown.
“The study of specific causes of stillbirth has been hampered by the lack of uniform protocols to evaluate and classify stillbirths and by decreasing autopsy rates,” Zahn said. “In most cases, stillbirth certificates are filled out before a full postnatal investigation has been completed and amended death certificates are rarely filed when additional information from the stillbirth evaluation emerges.”
More data and research is needed, he says. His organization “believes that stillbirth prevention is a responsibility shared broadly and has worked to raise awareness among legislators and stakeholders regarding U.S. stillbirths, the racial and ethnic inequities that exist, and the need for more research.”
March of Dimes, a non-profit organization that promotes maternal and child health, has opened a new research center. The center will study and combat poor health outcomes as well as long-standing racial differences that have made the U.S. a dangerous nation for childbirth.
“The center will focus solely on research aimed at closing the health equity gap in maternal and infant health outcomes through scientific research and technology development,” Cherot said.
Last year, in response to a Congress request, a group met with experts to discuss stillbirth. In March, the Stillbirth Working Group at the National Institutes of Health’s National Institute of Child Health and Human Development published a report that focused on barriers to collecting data on stillbirths, communities at higher risk, the psychological impact and treatment for mothers after stillbirth, and known risk factors.
They recommended improving data collection, addressing disparities and reducing U.S. stillbirth rates through research and preventive efforts.
O’Donnell took measures into her own hands and hired a placental pathologist from Yale to help determine Aaliyah’s cause of death. She had outgrown the placenta.
And she’s working on expanding Aaliyah in Action to help fill in the gaps she sees in the system.
“Nobody should be walking into a hospital pregnant and then walking out with empty arms. It’s even worse if you can prevent it. Many stillbirths can be prevented. And we can change this and I’m here to do that.”