May 26, 2023 -- Elizabeth O’Donnell found out she was pregnant in June 2020. It was a surprise, but she was very happy. She was never sick and says she was the healthiest she had ever been.
But around Thanksgiving, her daughter, who she was already planning to name Aaliyah, was moving a little more than normal. Then on Nov. 28, 7 months into her pregnancy, the unthinkable happened.
“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 her to go to the 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?'”
Everything had gone perfectly up to that point, she said.
“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 Denise Briscoe was born 4 days later on Dec. 1, 2020. But O'Donnell's trauma didn't end there. Her employer then also denied her paid maternity leave.
“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 then-30-year-old Washington, DC, school teacher decided to fight back. She went public with her story, posting a picture of herself holding Aaliyah from her hospital bed on Instagram. It went 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.”
Disgusted and disillusioned, she quit teaching and immediately began advocating for parents of stillborn children. Aaliyah in Action was born.
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 are helping struggling families in 40 states navigate life after such a devastating loss. Bereavement resources and books for parents and siblings are also being provided, and they 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 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 FMLA is a floor, not a ceiling, so it sets the baseline minimum protections, but states can go beyond those protections to make sure that people get the time off 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 believes women who have been denied paid medical leave after delivering a stillborn child need to make it very clear what their medical and health needs are in order to physically and emotionally recover.
Every year at least 21,000 babies are stillborn in the United States. That’s about 1 in every 175 births, according to the CDC.
The Star Legacy Foundation says the stillbirth rate in the U.S. has remained the same for several decades and is higher than many other industrialized countries.
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.
The former nurse practitioner says the bottom line is that in the U.S., stillbirth has not been made a priority.
“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 can be caused by infections, birth defects, and other pregnancy complications. 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 stillborn child than Hispanic or white women. Women 35 and older and women in lower income brackets are also at higher 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: Maintain a healthy weight and avoid drugs, tobacco, and alcohol. See a doctor right away if you experience 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 the reason for most stillbirths is still 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.”
He says more data and research are needed. 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.”
The March of Dimes has launched a new center that will research and tackle poor health outcomes and longstanding racial disparities that they say make the U.S. among the most dangerous developed nations 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.
And last year, following a request from Congress, a group of experts met 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 recordkeeping and data collection; addressing disparities in risk; and reducing the U.S. stillbirth rate through research and prevention 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 her 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. Especially if it can be prevented. Not all stillbirths are preventable, but many, many are. And we can change this and I’m here to do that.”