Karmin Strohfus, the lead nurse at a South Dakota jail, punched numbers into a phone like lives depended on it. She had in her care a pregnant woman with syphilis, a highly contagious, potentially fatal infection that can pass into the womb. A treatment could cure the woman and protect her fetus, but she couldn’t find it in stock at any pharmacy she called — not in Hughes County, not even anywhere within an hour’s drive.

Most people held at the jail where Strohfus works are released within a few days. “What happens if she gets out before I’m able to treat her?” she worried. Exasperated, Strohfus reached out to the state health department, which came through with one dose. The treatment required three. Officials told Strohfus to contact the federal Centers for Disease Control and Prevention for help, she said. The risks of harm to a developing baby from syphilis are so high that experts urge not to delay treatment, even by a day.

Nearly three weeks passed from when Strohfus started calling pharmacies to when she had the full treatment in hand, she said, and it barely arrived in time. The woman was released just days after she got her last shot.

Last June, Pfizer, the lone U.S. manufacturer of the injections, notified the Food and Drug Administration of an “impending stock out” that it anticipated would last a year. The company blamed “an increase in syphilis infection rates as well as competitive shortages.”

Across the country, physicians, clinic staff and public health experts say that the shortage is preventing them from reining in a surge of syphilis and that the federal government is downplaying the crisis. State and local public health authorities, which by law are responsible for controlling the spread of infectious diseases, report delays getting medicine to pregnant people with syphilis. This emergency was predictable: There have been shortages of this drug in eight of the last 20 years.

Yet federal health authorities have not prevented the drug shortages in the past and aren’t doing much to prevent them in the future.

Syphilis, which is typically spread during sex, can be devastating if it goes untreated in pregnancy: About 40% of babies born to women with untreated syphilis can be stillborn or die as newborns, according to the CDC. Infants that survive can suffer from deformed bones, excruciating pain or brain damage, and some struggle to hear, see or breathe. Since this is entirely preventable, a baby born with syphilis is a shameful sign of a failing public health system.

In 2022, the most recent year for which the CDC has data available, more than 3,700 babies were infected with syphilis, including nearly 300 who were stillborn or died as infants. More than 50% of these cases occurred because, even though the pregnant parent was diagnosed with syphilis, they were never properly treated.

That year, there were 200,000 cases identified in the U.S., a 79% increase from five years before. Infection rates among pregnant people and babies increased by more than 250% in that time; South Dakota, where Strohfus works, had the highest rates — including a more than 400% increase among pregnant women. Statewide, the rate of babies born with the disease, a condition known as congenital syphilis, jumped more than 40-fold in just five years.

And that was before the current shortage of shots.

In Mississippi, the state with the second highest rate of syphilis in pregnant women, Dr. Caroline Weinberg started having trouble this summer finding treatments for her clinic’s patients, most of whom are uninsured, live in poverty or lack transportation. She began spending hours each month scouring medicine suppliers’ websites for available doses of the shots, a form of penicillin sold under the brand name Bicillin L-A.

“The way people do it for Taylor Swift, that’s how I’ve been with the Bicillin shortage,” Weinberg said. “Desperately checking the websites to see what I can snag.”

The shortage is driving up infection rates even further.

In a November survey by the National Coalition of STD Directors, 68% of health departments that responded said the drug shortage will cause syphilis rates in their area to increase, further crushing the nation’s most disadvantaged populations.

“This is the most basic medicine,” said Meghan O’Connell, chief public health officer for the Great Plains Tribal Leaders’ Health Board, which represents 18 tribal communities in South Dakota and three other states. “We allow ourselves to continue to not have enough, and it impacts so many people.”

ProPublica examined what the federal government has done to manage the crisis and the ways in which experts say it has fallen short.

The government could pressure Pfizer to be more transparent.

Twenty years ago, there were at least three manufacturers of the syphilis shot. Then Pfizer, one of the manufacturers, purchased the other two companies and became the lone U.S. supplier.

Pfizer’s supply has fallen short since then. In 2016, the company announced a shortage due to a manufacturing issue; it lasted two years. Even during times when Pfizer had not notified the FDA of an official shortage, clinics across the country told ProPublica, the shots were often hard to get.

Several health officials said they would like to see the government use its power as the largest purchaser of the drug to put pressure on Pfizer to produce adequate supplies and to be more transparent about how much of the drug they have on hand, when it will be widely available and how stable the supply will be going forward.

In response to questions, Pfizer said there are two reasons its supply is falling short. One, the company said, was a surge in use of the pediatric form of the drug after a shortage of a different antibiotic last winter. Pfizer also blamed a 70% increase in demand for the adult shots since last February, which it described as unexpected.

Public health experts say the increase in cases and subsequent rise in demand was easy to see coming. Officials have been raising the alarm about skyrocketing syphilis cases for years. “If Pfizer was truly caught completely off guard, it raises significant questions about the competency of the company to forecast obvious infectious disease trends,” a coalition of organizations wrote to the White House Drug Shortage Task Force in September.

Pfizer said it is consistently communicating with the CDC and FDA about its supply and that it has been transparent with public health groups and policymakers.

The FDA has a group dedicated to addressing drug shortages. But Valerie Jensen, associate director of that staff, said the FDA can’t force manufacturers to make more of a drug. “It is up to manufacturers to decide how to respond to that increased demand.” she said. “What we’re here to do is help with those plans.”

Pfizer said it had a target of increasing production by about 20% in 2023 but faced delays toward the end of the year. The company did not explain the reason for those delays.

The company said it has invested $38 million in the last five years in the Michigan facility where it makes the shots and that it is increasing production capacity. It also said it is adding evening shifts at the facility and actively recruiting and training new workers. Pfizer said it also reduced manufacturing time from 110 to 50 days. By the end of June, the company expects the supply to recover, which it described as having eight weeks of inventory based on its forecast demands with no disruptions in sight.

The government could manufacture the drug itself.

Having only one supplier for a drug, especially one of public health importance, makes the country vulnerable to shortages. With just one manufacturer, any disruption — contamination at a plant, a shortage of raw materials, a severe weather event or a flawed prediction of demand — can put lives at risk. What’s ultimately needed, public health experts say, is another manufacturer.

Congressional Democrats recently introduced a bill that would authorize the U.S. Department of Health and Human Services to manufacture generic drugs in exactly this scenario, when there are few manufacturers and regular shortages. Called the Affordable Drug Manufacturing Act, it would also establish an office of drug manufacturing.

This same bill was introduced in 2018, but it didn’t have bipartisan support and was never taken up for a vote. Sen. Elizabeth Warren, the Massachusetts Democrat who introduced the bill in the Senate, said she’s hopeful this time will be different. Lawmakers from both parties understand the risks created by drug shortages, and COVID-19 helped everyone understand the role the government can play to boost manufacturing.

Still, it’s unlikely to be passed with the current gridlock in Congress.

The government could reserve syphilis drugs for infected patients.

Responding to the shortage of shots to treat the disease, the CDC in July asked health care providers nationwide to preserve the scarce remaining doses for people who are pregnant. The shots are considered the gold standard treatment for anyone with syphilis, faster and with fewer side effects than an alternative pill regimen. And for people who are pregnant, the pills are not an option; the shots are the only safe treatment.

Despite that call, the military is giving shots to new recruits who don’t have syphilis, to prevent outbreaks of severe bacterial respiratory infections. The Army has long administered this treatment at boot camps held at Fort Leonard Wood, Fort Moore and Fort Sill. The Army has been unable to obtain the shots several times in the past few years, according to the U.S. Army Center for Initial Military Training. But the Defense Health Agency’s pharmacy operations center has been working with Pfizer to ensure military sites can get them, a spokesperson for the Defense Health Agency said.

“Until we think about public health the way we think about our military, we’re not going to see a difference,” said Dr. John Vanchiere, chief of pediatric infectious diseases at Louisiana State University Health Shreveport.

Some public health officials, including Alaska’s chief medical officer, Dr. Anne Zink, questioned whether the military should be using scarce shots for prevention.

“We should ask if that’s the best use,” she said.

Using antibiotics to prevent streptococcal outbreaks is a well-established, evidence-based public health practice that’s also used by other branches of the armed services, said Lt. Col. Randy Ready, a public affairs officer with the Army’s Initial Military Training center. “The Army continues to work with the CDC and the entire medical community in regards to public health while also taking into account the unique missions and training environments our Soldiers face,” including basic training, Ready said in a written statement.

The government isn’t stockpiling syphilis drugs.

In rare instances, the federal government has created stockpiles of drugs considered key to public health. In 2018, confronting shortages of various drugs to treat tuberculosis, the CDC created a small stockpile of them. And the federal Administration for Strategic Preparedness and Response keeps a national stockpile of supplies necessary for public health emergencies, including vaccines, medical supplies and antidotes needed in case of a chemical warfare attack.

In November, the Biden administration announced it was creating a new syphilis task force. When asked why the federal government doesn’t stockpile syphilis treatments, Adm. Rachel Levine, the HHS official who leads the task force, said officials don’t routinely stockpile drugs, because they have expiration dates.

In a written statement, an HHS spokesperson said that Bicillin has a shelf life of two years and that the Strategic National Stockpile “does not deploy products that are commercially available.” In general, the spokesperson wrote, stockpiles are most effective before a national shortage begins and can’t overcome the problems of limited suppliers or fragile supply chains. “There is also a risk that stockpiles can exacerbate shortages, particularly when supply is already low, by removing drugs from circulation that would have otherwise been available,” the spokesperson wrote.

Stephanie Pang, a senior director with the coalition of STD directors, said that given the critical role of this drug and the severe access concerns, she thinks a stockpile is necessary. “I don’t have another solution that actually gets drugs to patients,” Pang said.

The government could declare a federal emergency.

Some public health officials say the federal government needs to treat the syphilis crisis the way it did Ebola or monkeypox.

Declare a federal emergency, said Dr. Michael Dube, an infectious disease specialist for more than 30 years. That would free up money for more public health staff and fund more creative approaches that could lead to a long-term solution to the near-constant shortages, he said. “I’d hate to have to wait for some horrible anecdotes to get out there in order to get the public’s and the policymakers’ minds on it,” said Dube, who oversees medical care for AIDS Healthcare Foundation wellness clinics across the country.

Citing an alarming surge in syphilis cases, the Great Plains Tribes wrote to the HHS secretary last week asking that the agency declare a public health emergency in their areas. In the request, they asked HHS to work globally to find adequate syphilis treatment and send the needed medicine to the Great Plains region.

During the 2014 outbreak of Ebola in West Africa, Congress gave hundreds of millions of dollars to HHS to help develop new rapid tests and vaccines. Facing a global outbreak of monkeypox in 2022, a White House task force deployed more than a million vaccines, regularly briefed the public and sent extra resources to Pride parades and other places where people at risk were gathered.

Levine, leader of the federal syphilis task force, countered that declaring an emergency wouldn’t make much of a difference. The government, she said, already has a “dramatic and coordinated response” involving several agencies.

The FDA recently approved an emergency import of a similar syphilis treatment made by a French manufacturer that had plenty on hand. According to the company, Provepharm, the imported shots are enough to cover approximately one or two months of typical use by all people in the U.S. (The FDA would not say how many doses Provepharm sent, and the company said it was not allowed to reveal that number under the federal rules governing such emergency imports.)

Clinics applaud that development. But many of them can’t afford the imported shots.

The government could do more to rein in the cost.

Clinics and hospitals that primarily serve low-income patients often qualify for a federal program that allows them to purchase drugs at steeply discounted prices. Pharmaceutical companies that want Medicaid to cover their outpatient drugs must participate in the program.

One factor in determining the discount price is whether a pharmaceutical company has raised the price of a drug by more than the rate of inflation. Because Pfizer has hiked the price of its Bicillin shots significantly over the years, the government requires that it be sold to qualifying clinics for just pennies a dose. Otherwise, a single Pfizer shot can retail for upwards of $500. The French shots are comparable in retail price and not eligible for the discount program.

Several clinic directors also said they worried that drug distributors were reserving the limited supply of the Pfizer shot for organizations that could pay full price. For several days in January, for example, the website of Henry Schein, a medical supplier, showed doses of the shot available at full price, while doses at the penny pricing were out of stock, according to screenshots shared with ProPublica. When asked whether it was only selling shots at full price, a spokesperson for Henry Schein did not respond to the question.

Local health departments that qualify for the discount program told ProPublica they’ve had to pay full price at other distributors, because it was the only stock available.

The Health Resources and Services Administration, the federal agency that regulates the discount program, said that a drug manufacturer is ultimately responsible for ensuring that when supplies are available, they are available at the discounted price. When asked about this, Pfizer said that it has “one inventory that is distributed to our trade partners” and that hospitals and clinics that qualify for the discount program are “responsible for ensuring compliance with the program and orders through the wholesaler accordingly.” The company added, “Pfizer plays no part in this process.”

In October, on Weinberg’s regular search for shots for her Mississippi clinic, she found doses of Bicillin for sale at the discounted price and purchased 40. “The idea that we’re supposed to be hoarding treatment is a horrific compact,” she said. Word got out that the clinic, called Plan A, has some shots, and other clinics began sending pregnant patients there.

The clinic’s supply is dwindling. Weinberg is happy to get the shots to patients who need them. But she’s not sure how much longer her reserve will last — or if she’ll be able to find more when they’re gone.

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 mailto:stillbirth@propublica.org. 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:

• What Is Stillbirth?
• Are Stillbirths Preventable?
• What to Expect After a Stillbirth.
• Grieving After a Stillbirth.
• What You Might Say and Do After a Loved One Experiences a Stillbirth.

What Is Stillbirth?

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:

• Early: 20-27 weeks of pregnancy.
• Late: 28-36 weeks of pregnancy.
• Term: 37 or more weeks of pregnancy.

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:

• The baby not growing as expected.
• Placental abnormalities or problems with the umbilical cord.
• Genetic or structural disorders that cause developmental issues.
• High blood pressure before pregnancy or preeclampsia, a potentially fatal complication that usually appears late in pregnancy and causes high blood pressure.
• Diabetes before or during pregnancy.
• An infection in the fetus, the placenta or the pregnant person.
• Smoking.
• Being 35 or older.
• Obesity.
• Being pregnant with more than one baby.

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:

• More closely monitor patients with certain risk factors, like high blood pressure, diabetes or obesity.
• Ask about prior infant loss or other obstetrical trauma.
• Carefully assess whether a baby’s growth is normal.
• Work to diagnose genetic anomalies.
• Teach patients how to track their baby’s movements and encourage them to speak up if they notice activity has slowed or stopped.
• Deliver at or before 39 weeks if there are concerns.

What are the risks of stillbirth over the course of a pregnancy?

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:

1. Stop smoking.
2. Regularly monitor growth to reduce the risk of fetal growth restriction, when the fetus is not growing as expected.
3. Understand the importance of acting quickly if fetal movement decreases.
4. Sleep on your side after 28 weeks.
5. Talk to your doctor about when to deliver. Depending on your situation, it may be before your due date.

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:

• A risk assessment to identify prenatal needs.
• A nonstresstest, which checks the fetus’s heart rate and how it changes as the fetus moves.
• A biophysical profile, which is done with an ultrasound to measure body movement, muscle tone and breathing, along with amniotic fluid volume.

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:

• What is the best way to contact you if I have questions or concerns?
• How do you manage inquiries after hours and on weekends? Do you see walk-ins?
• How do you manage prenatal risk assessments?
• What should I know about the risks of a miscarriage or stillbirth?
• How do you decide when a patient should be induced?

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.”

What to know in the last trimester.

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:

• Whether you need a nonstress test to determine if the fetus is getting enough oxygen.
• The best way to track fetal movements.
• What to do if your baby stops moving.
• Whether you are at risk for preeclampsia or gestational diabetes.

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.”

What to Expect After a Stillbirth

What might happen at the hospital?

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:

• Blood work, a placental exam, an autopsy and genetic testing.
• A social worker or counselor, bereavement resources and religious or chaplain support.
• The option to be isolated from the labor rooms.
• Someone to take photos of you and your baby, typically either a nurse or an outside group.
• A small cooling cot that allows parents to spend more time with their babies after a stillbirth. If one is not available, you can ask for ice packs to put in the swaddle or the bassinet.
• A mold of your baby’s hands and feet.
• Information about burial or cremation services.
• Guidance on what to do if your milk comes in.

Getting an autopsy after a stillbirth.

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.

Paying for an autopsy after a stillbirth.

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.

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 Stillbirth

Finding the right words can be difficult. The following are a few suggestions from parents who went through a stillbirth.

Helpful:

• Acknowledge the loss and offer condolences.
• Ask if the baby was named and use the name.
• Allow space for the family to talk about their baby.

Unhelpful:

• Avoid talking about the baby.
• Minimize the loss or compare experiences.
• Start statements with “at least.”

Suggested phrases to avoid:

• “You’re young. You can have more kids.”
• “At least you have other children.”
• “These things just happen.”
• “Your baby is in a better place now.”