Sophia Kovatch contributed research.
When Babies Die Before Taking Their First Breath
Every year, more than 20,000 pregnancies in the U.S. end in a stillbirth, the death of an expected child at 20 weeks or more of pregnancy. Research shows as many as 1 in 4 stillbirths may be preventable. We interviewed dozens of parents of stillborn children who said their health care providers did not tell them about risk factors or explain what to watch for while pregnant. They said they felt blindsided by what followed. They did not have the information needed to make critical decisions about what happened with their baby’s body, about what additional testing could have been done to help determine what caused the stillbirth, or about how to navigate the process of requesting important stillbirth documents.
This guide is meant to help fill the void of information on stillbirths. It’s based on more than 150 conversations with parents, health care providers, researchers and other medical experts.
Whether you’re trying to better prepare for a pregnancy or grieving a loss, we hope this will help you and your family. This guide does not provide medical advice. We encourage you to seek out other reliable resources and consult with providers you trust.
We welcome your thoughts and questions at [email protected]. You can share your experience with stillbirth with us. If you are a health care provider interested in distributing this guide, let us know if we can help.
Table of contents:
Many people told us that the first time they heard the term stillbirth was after they delivered their stillborn baby. In many cases, the lack of information and awareness beforehand contributed to their heartache and guilt afterward.
Stillbirth is defined in the U.S. as the death of a baby in the womb at 20 weeks or more of pregnancy. Depending on when it happens, stillbirth is considered:
About half of all stillbirths in the U.S. occur at 28 weeks or later.
What is the difference between a stillbirth and a miscarriage?Both terms describe pregnancy loss. The distinction is when the loss occurs. A miscarriage is typically defined as a loss before the 20th week of pregnancy, while stillbirth is after that point.
How common is stillbirth?Each year, about 1 in 175 deliveries in the U.S. are stillbirths — that’s about 60 stillborn babies every day — making it one of the most common adverse pregnancy outcomes, but it is rarely discussed.
If you are surprised by that fact, you are not alone. Many people we spoke to did not know how common stillbirths are. Leandria Lee of Texas said she spent her 2021 pregnancy unaware that her daughter, Zuri Armoni, could die in the last phase of her pregnancy.
“If I was prepared to know that something could happen, I don't think it would have been as bad. But to not know and then it happens, it affects you,” she said of her stillbirth at 35 weeks.
Some doctors have told us they don’t introduce the possibility of a stillbirth because they don’t want to create additional anxiety for patients.
Other doctors say withholding information leaves patients unprepared.
“We have this idea that we can’t scare the patient, which to me is very paternalistic,” said Dr. Heather Florescue, an OB-GYN near Rochester, New York, who works to inform doctors and patients about stillbirth prevention.
What causes stillbirths?There is a lot we don’t know about stillbirths because there hasn’t been enough research. The cause of the stillbirth is unknown in about 1 in 3 cases.
What we do know is that a number of factors may cause or increase the risk of a stillbirth, including:
But not all doctors, hospitals or health departments perform tests to identify the potential cause of a stillbirth or determine if it could have been prevented. Even when a cause is identified, fetal death records are rarely updated. This means data is sometimes inaccurate. Researchers strongly encourage doctors to perform a stillbirth evaluation, which includes an examination of the placenta and umbilical cord, a fetal autopsy and genetic testing.
If your hospital or doctor does not proactively offer one or more of these exams, you can ask them to conduct the tests. Research shows that placental exams may help establish a cause of death or exclude a suspected one in about 65% of stillbirths, while autopsies were similarly useful in more than 40% of cases.
Are Stillbirths Preventable?Not all stillbirths are preventable, but some are. For pregnancies that last 37 weeks or more, one study found that nearly half of stillbirths are potentially preventable.
Dr. Joanne Stone, who last year was president of the Society of Maternal-Fetal Medicine, leads the country’s first Rainbow Clinic at Mount Sinai Hospital in New York. The clinic is modeled on similar facilities in the United Kingdom that care for people who want to conceive again after a stillbirth. She said many doctors used to think there was nothing they could do to prevent stillbirth.
“People just looked at it like, ‘Oh, it was an accident, couldn’t have been prevented,’” said Stone, who also is the system chair of the obstetrics, gynecology and reproductive science department at the Icahn School of Medicine. “But we know now there are things that we can do to try to prevent that from happening.”
She said doctors can:
The risk of a stillbirth increases significantly toward the end of pregnancy, especially after 39 weeks. The risk is higher for people who get pregnant at 35 or older. The risk begins to climb even earlier, around 36 weeks, for people pregnant with twins.
What you and your doctor can do to reduce the risk of stillbirth.While federal agencies in the U.S. have yet to come up with a checklist that may help reduce the risk of stillbirth, the Stillbirth Centre of Research Excellence in Australia has adopted a Safer Baby Bundle that lists five recommendations:
We talk a lot about miscarriages, and no one ever mentions stillbirth. I think there’s this fear that you can speak it into existence. Even when we found out CJ was dead, I assumed I was going to have a C-section. You don’t think you’re going to have to give birth.”
The American College of Obstetricians and Gynecologists has compiled a list of tests and techniques doctors can use to try to reduce the risk of a stillbirth. They include:
The group stressed that there is no test that can guarantee a stillbirth won’t happen and that individual circumstances should determine what tests are run.
Are some people at higher risk for stillbirth?Black women are more than twice as likely to have a stillbirth as white women. There are a number of possible explanations for that disparity, including institutional bias and structural racism, and a patient’s pre-pregnancy health, socioeconomic status and access to health care. In addition, research shows that Black women are more likely than white women to experience multiple stressful life events while pregnant and have their concerns ignored by their health care provider. Similar racial disparities drive the country’s high rate of maternal mortality.
How to find a provider you trust.Finding a doctor to care for you during your pregnancy can be a daunting process. Medical experts and parents suggest interviewing prospective providers before you decide on the right one.
Here is a short list of questions you might want to ask a potential OB-GYN:
If a provider doesn’t answer your questions to your satisfaction, don’t be reluctant to move on. Dr. Ashanda Saint Jean, chair of the obstetrics and gynecology department at HealthAlliance Hospitals of the Hudson Valley in New York, said she encourages her patients to find the provider that meets their needs.
“Seek out someone that is like-minded,” said Saint Jean “It doesn’t have to be that they’re the same ethnicity or the same race, but like-minded in terms of the goals of what that patient desires for their own health and prosperity.”
Never fear to advocate for yourself or your child. Because if your baby was in your arms, you would not hesitate to go to the pediatrician or the ER. Don’t think you’re being paranoid. You’re a mother already.”
The last trimester can be an uncomfortable and challenging time as the fetus grows and you get increasingly tired. During this critical time, your provider should talk to you about the following topics:
Rachel Foran’s child, Eoin Francis, was stillborn at 41 weeks and two days. Foran, who lives in New York, said she believes that if her doctor had tracked her placenta, and if she had understood the importance of fetal movement, she and her husband might have decided to deliver sooner.
She remembers that her son was “very active” until the day before he was stillborn.
“I would have gone in earlier if someone had told me, ‘You’re doing this because the baby could die,’” she said of tracking fetal movement. “That would have been really helpful to know.”
Researchers are looking at the best way to measure the health, blood flow and size of the placenta, but studies are still in their early stages.
“If someone had been doing that with my son’s,” Foran said, “my son would be alive.”
A placental exam and an autopsy showed that a small placenta contributed to Foran’s stillbirth.
How often should you feel movement?Every baby and each pregnancy are different, so it is important to get to know what levels of activity are normal for you. You might feel movement around 20 weeks. You’re more likely to feel movement when you’re sitting or lying down. Paying attention to movement during the third trimester is particularly important because research shows that changes, including decreased movement or bursts of excessive activity, are associated with an increased risk of stillbirth. Most of the time, it’s nothing. But sometimes it can be a sign that your baby is in distress. If you’re worried, don’t rely on a home fetal doppler to reassure you. Reach out to your doctor.
Saint Jean offers a tip to track movement: “I still tell patients each day to lay on their left side after dinner and record how many times their baby moves, because then that will give you an idea of what’s normal for your baby,” she said.
Other groups recommend using the Count the Kicks app as a way of tracking fetal movements and establishing what is normal for that pregnancy. Although there is no scientific consensus that counting kicks can prevent stillbirths, the American College of Obstetricians and Gynecologists and other groups recommend that patients be aware of fetal movement patterns.
Dr. Karen Gibbins is a maternal-fetal medicine specialist at Oregon Health & Science University who in 2018 had stillborn son named Sebastian. She said the idea that babies don’t move as much at the end of pregnancy is a dangerous myth.
“You might hear that babies slow down at the end,” she said. “They don’t slow down. They just have a little less space. So their movements are a little different, but they should be as strong and as frequent.”
Parents are often asked to make several important decisions while they are still reeling from the shock and devastation of their loss. It’s completely understandable if you need to take some time to consider them.
Some other things you can ask for (if medical personnel don’t offer them) are:
I wish I would have known that I could hold my son longer, that I could have given him a bath, that I could have dressed him in the clothes that I wanted to, that I could have kept him in my room longer, that I could have taken more pictures, that I didn't have to be afraid of him physically.”
Whether to have an autopsy is a personal decision. It may not reveal a cause of death, but it might provide important information about your stillbirth and contribute to broader stillbirth research. Autopsies can be useful if you are considering another pregnancy in the future. Families also told us that an autopsy can help parents feel they did everything they could to try to understand why their baby died.
But several families told us their health care providers didn’t provide them with the right information to help with that decision. Some aren’t trained in the advantages of conducting an autopsy after a stillbirth, or in when and how to sensitively communicate with parents about it. Some, for example, don’t explain that patients can still have an open-casket funeral or other service after an autopsy because the incisions can easily be covered by clothing. Others may not encourage an autopsy because they think they already know what caused the stillbirth or don’t believe anything could have been done to prevent it. In addition, not all hospitals have the capacity to do an autopsy, but there may be private autopsy providers that can perform one at an additional cost.
You can read more about autopsies in our reporting.
It was explained to us that an autopsy would have been extremely expensive. It wouldn’t have given us any answers, and it wasn’t covered by insurance. And with those three things that the medical staff and professionals told us, we made the emotional decision to not do it. I wish that I would have been more prepared. I 100% regret not doing it. An autopsy is the closest we will get to finding out what is taking our babies.”
If you decide you want an autopsy, you may wonder whether you need to pay out-of-pocket for it. Several families told us their providers gave them incomplete or incorrect information. Many larger or academic hospitals offer autopsies at no cost to patients. Some insurance companies also cover the cost of an autopsy after a stillbirth.
When hospitals don’t provide an autopsy, they may give you names of private providers. That was the case for Rachel Foran. The hospital gave her and her husband a list of numbers to call if they wanted to pay for an autopsy themselves. The process, she said, shocked her.
“I had just delivered and we had to figure out what to do with his body,” Foran said. “It felt totally insane that that was what we had to do and that we had to figure it out on our own.”
An independent autopsy, records show, cost them $5,000.
What is a certificate of stillbirth and how do I get one?A fetal death certificate is the official legal document that records the death. This is the document used to gather data on and track the number of stillbirths in the country. Many states also issue a certificate of stillbirth or a certificate of birth resulting in stillbirth, which acknowledge the baby’s birth. Families told us they appreciated having that document, since typical birth certificates are not issued for stillbirths. You can usually request a certificate from the vital records office.
Grieving After a Stillbirth What are the effects of stillbirths on parents and families?Over and over, families told us the effects of losing a baby can reverberate for a lifetime.
I had so much love in my heart, but I was so broken. It’s really such an empty feeling when they go to wheel you out of labor and delivery and you’re passing monitors that you hear babies’ heartbeats after your baby just died. And you hate these women, even though they’ve done nothing to you and neither have their children, but you’re just so envious of it.”
Bereavement support groups may help provide a space to share experiences and resources. Hospitals and birth centers may suggest a local grief group.
We talked with Anna Calix, a maternal health expert who became active in perinatal loss prevention after her son Liam was stillborn on his due date in 2016. Calix leads grief support groups for people of color in English and Spanish.
She suggested rededicating the time you would have spent taking care of a new baby to the grief process.
“You can do that by addressing your own thoughts and feelings and really experiencing those feelings,” Calix said. “We like to push those feelings away or try to do something to distract and avoid, but no matter what we do, the feelings are there.”
It’s important, she said, to give yourself permission to grow your connection with your child and work through thoughts of guilt or blame.
What You Might Say and Do After a Loved One Experiences a StillbirthFinding the right words can be difficult. The following are a few suggestions from parents who went through a stillbirth.
Helpful:
Unhelpful:
Suggested phrases to avoid:
Sophia Kovatch contributed research.
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Sophia Kovatch contributed research.
Sophia Kovatch contributed research.
