The Washington PostDemocracy Dies in Darkness

Stillbirth continues to happen. The silence around it needs to end.

Alana’s family celebrates her life on what would have been her seventh birthday. The siblings floated flowers down the river in honor of Alana.
Alana’s family celebrates her life on what would have been her seventh birthday. The siblings floated flowers down the river in honor of Alana. (Courtesy of Samantha Banerjee)

It was the first thing I saw when we came back from the hospital: the drying rack with tiny, pristine clothes.

The last-minute assortment of baby apparel had arrived too late to bring our daughter home in, as I had planned. But, hung lovingly after a quick wash in organic baby detergent just hours before we departed for her delivery, they would be perfect for newborn photos upon our return.

I buried her in those clothes.

Our daughter, Alana, never got to take a breath. Just two days before her due date, her life was stolen by the same silent crisis that’s claiming 65 other children’s lives — three kindergarten classes — every single day in the United States:

Stillbirth. My husband and I never knew it still happened, until it happened to us.

We had walked into the hospital that day fully expecting to bring our baby girl home. Instead, we were devastated to learn that her heart was no longer beating.

And so we drove back, shellshocked, shattered and empty-handed. And Alana, the first grandchild on both sides of our family, never got to wear any of the dozens of outfits gifted to her by the family and friends who had so eagerly anticipated her arrival. Drawers full of onesies proclaimed their love: Grandma adores me. Cutest niece. Daddy’s under my spell.

It was these I was thinking of just days before what should have been her eighth birthday, when I and a few dozen other bereaved families marched on Oct. 1 five miles through Manhattan with a clothesline of 900 infant onesies — stretching two-plus city blocks — on our backs.

“Nine hundred babies are born still just in New York City every year,” said Joanne Stone, chair of Obstetrics, Gynecology and Reproductive Science for Mount Sinai Health System, president-elect of the Society for Maternal Fetal Medicine and founder of the upcoming NYC Rainbow Clinic. “There are over 23,000 such deaths in our country, and a tremendous number of them are potentially preventable,” Stone said.

Based on a successful model from the United Kingdom for specialized clinical and psychological care for families pregnant again after a loss, the Rainbow Clinic will be the first institution of its kind in the United States.

Change is desperately needed; we organized the NYC Onesie Walk to kick off Pregnancy & Infant Loss Awareness Month, which is every October.

Stillbirth can happen to anyone, but there’s very little awareness of this. At 1 in 170 pregnancies, stillbirth is rare, but not nearly as rare as parents are led to think. Our conversations on the streets of New York reflected this.

“Stillbirth? Isn’t that a medieval thing?”

“What did the mom do that caused her baby to die?”

“I guess that happens to poor families?”

People were flabbergasted to learn that stillbirth is happening daily, even in “textbook” healthy, low-risk, privileged pregnancies such as mine.

Here are all the things I didn’t know about stillbirth, until it happened to me

I can’t blame them. How are families supposed to know about — let alone protect their children from — a risk that no one bothers to tell you about?

And make no mistake: the silence around stillbirth is lethal. Stillbirth claims more children’s lives in the United States each year than preterm birth, sudden infant death syndrome, car accidents, drowning, guns, flu, fire, poison and (the reason no pregnant person is allowed to enjoy a deli sandwich) listeria — combined.

Stillbirth is just as preventable as any of these. Research has shown at least 25 percent of stillbirths — 47 percent at term — could be averted. But unlike all these other risks that parents hear much more about, when it comes to stillbirth, no one is empowering families to keep their babies safe.

Stillbirth in the 21st century? It happens.

Instead, families such as mine are left to wonder, What if? What if I had known it’s an old wives’ tale that babies slow down at the end of pregnancy? What if I’d been taught to sleep on my side in the third trimester instead of my back? What if I’d been told that it was possible for my perfectly healthy baby to die months after I decorated her nursery and threw two baby showers in her honor?

Would I have spoken up more after I noticed her kicks getting weaker? Would I have pushed back when the multiple medical providers I brought this up with told me she was “just running out of room?” Would we maybe have caught that my tough little fighter of a daughter had managed to survive not one but hundreds of episodes of umbilical cord compression over those final weeks, until the resulting bleeding into her placenta finally robbed her of her life?

I’ll never know, but that didn’t stop me from spending years agonizing over these unanswerable questions, torturing myself with the thought that if I’d only known then what I know now.

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No parent deserves to live with that kind of soul-shredding guilt. But I’ve never once met a stillbirth mom who doesn’t.

Harvey Kliman, research scientist and director of Yale’s Reproductive and Placental Research Unit, has reviewed thousands of placentas from stillborn babies. The No. 1 question he gets from bereaved mothers: What did I do to cause this?

“One of the consequences of families being left without answers is that mothers in particular feel guilty, as if they did something wrong,” Kliman said. “There are many causes for stillbirth, and there is virtually nothing a mother can do to cause such a loss.”

“But,” Kliman is careful to point out, “that doesn’t mean that some number of these losses can’t be prevented.”

Other countries have shown that with better prenatal surveillance we could identify many more vulnerable babies and proactively manage their risks. Kliman has developed a simple 30-second ultrasound measurement that can detect one of the most common causes of stillbirth.

“If we just look at third trimester stillbirths, 36 percent are due to small placentas,” he said. “So it suggests that maybe we should check women in the third trimester to see if the placenta is small, and the Estimated Placental Volume technique does just that.”

But there are just a handful of providers across the country who routinely use EPV, and even those who are interested are heavily disincentivized from changing the way they practice medicine. The sad truth is that any deviation from the standard of their peers opens them up to potential litigation.

“Acting consistent with the standard of care almost guarantees the doctor can’t be liable for malpractice,” said Jill Wieber Lens, a professor at the University of Arkansas School of Law and a leading expert on legal recognition and treatment of stillbirth. “Deviating from the standard of care — even with the intention to prevent stillbirth and even with the pregnant patient’s consent — however, creates a high risk of liability for malpractice if the baby is injured.”

A physician who makes a judgment call to deliver an at-risk baby early and ends up with a costly NICU stay can be liable for extensive medical expenses plus emotional damages. In contrast, less litigation concern exists with stillbirth because what parents can sue for is limited.

“The damages are much lower because little to no medical expenses exist,” Wieber Lens said. “Stillbirth mainly causes only emotional injury and many states limit the amount of noneconomic damages that can be recovered.”

Enough is enough. With tens of thousands of bereaved families across the country, we have reached a critical mass. It is time to come together and call for change.

Next October, we are marching on Washington to demand action.

We are calling for updates to routine prenatal protocols to better inform expectant parents of stillbirth, and equip them and their providers with simple, proven tools to lower their risks.

We are demanding more federal and state funding toward stillbirth research, awareness and especially prevention.

And we are not going to take no for an answer. For Alana, and all the babies we might have saved:

It’s time to end preventable stillbirth.

Samantha Banerjee is the executive director of PUSH for Empowered Pregnancy, a nonprofit organization dedicated to driving down the incidence of stillbirth in the United States. She lives outside New York, and is eager to hear from anyone who is as passionate as she is about breaking the silence on stillbirth. Banerjee can be reached at samantha@pushpregnancy.org.

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10 ways to lower your risks of stillbirth

Not all stillbirths are preventable but many are. If you are expecting a baby, here are some simple things you can do to reduce your risks — and red flags that warrant a call to your medical provider. (Note: This is not an exhaustive list, and all items may not be applicable for every pregnant person.)

Know your normal: No one knows your baby or your body better than you. Pay close attention to your baby’s behavior and your pregnancy symptoms, and be on the lookout for any urgent maternal warning signs such as severe headache, swelling, or nausea, heavy bleeding, trouble breathing, vision changes, high fever or itchy hands and feet.

Count the kicks: Movement matters, and there's no set standard for “normal” fetal movement because every baby and every pregnancy is different. Pay close attention to how frequently your baby moves, how strong their kicks are and what times of day your baby is typically active. Any changes should be checked out immediately. (Important: It is a myth that babies slow down at the end of pregnancy.) Consider using a tool such as the free Count the Kicks app to remind you to check in with your baby every day.

Always ask: If you have any concerns about your pregnancy, speak up right away, especially if you notice a change in your baby's movements. Don't wait until your next appointment, even if it's the next day. Swift action could literally save your or your baby's life.

Side to sleep: In the third trimester, try to fall asleep on your side rather than your back to maximize the flow of oxygen- and nutrient-rich blood to your baby during the night. And if you are exceptionally tired or have been snoring, ask your doctor about being screened for sleep-disordered breathing.

Get vaccinated Contracting the coronavirus significantly increases the risks of serious complications, including death, to both you and your baby. The coronavirus vaccine has been shown to be safe and effective in pregnancy, and is endorsed by all major public health institutions, including the Centers for Disease Control and Prevention, American College of Obstetricians and Gynecologists, Society for Maternal-Fetal Medicine, Association of Women’s Health, Obstetric and Neonatal Nurses, American Academy of Pediatrics, American Medical Association, World Health Organization, UNICEF, Mayo Clinic, March of Dimes, and others.

Measure the placenta: Charting the growth of your baby's placenta alongside the growth of their body is a great way to catch potential early warning signs. Ask your doctor to spend 30 seconds using the Estimated Placental Volume technique whenever you get an ultrasound to record this critical information about your baby's health.

Screen the cervix: Ask your doctor to perform a transvaginal ultrasound between 16 and 20 weeks of pregnancy to screen for cervical insufficiency, and if there is any evidence of cervical shortening or strain, ask if you would be a good candidate for a cerclage, which is a stitch to reinforce the cervix and keep it closed until baby is ready to be delivered.

Check cord flow: During ultrasounds, ask your doctor to do a Doppler flow study to check the rate of blood flow in your baby's umbilical cord, especially if there are any signs of your baby being small for their gestational age or falling off their growth curve. Reduced blood flow could indicate potential problems with the cord or placenta, which should be closely monitored.

Request all the tests: There are several conditions that increase your risk of stillbirth and which can be identified with a simple blood/urine test. Ask your doctor to test you for clotting disordersgestational diabetesGroup B Strepcholestasis of pregnancy (if you experience itching), and for common infections such as congenital cytomegalovirus and parvovirus B19 — if you're not already immune, be extra careful about hand hygiene and don't share food, even with your other children.

Use your “mom voice”: If your concerns about your or your baby's well-being are being dismissed, don't hesitate to do whatever is necessary to make yourself heard. You are your baby's only voice, and you will never regret speaking up for your child. If you have to change providers, do so. Your and your baby's safety is paramount.

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