Utah has nation's first Center of Excellence for Stillbirth

SALT LAKE CITY — University of Utah Health has been named the nation's first Stillbirth Center of Excellence — a designation embracing an initiative to reduce both the number and the toll of stillbirths in the U.S. through a combination of best-practice clinical care, research, mental health services, bereavement support for families and tackling social justice issues that contribute.

The announcement was made this week in Salt Lake City during a symposium that brought together an international group of experts to address prevention, clinical care and disparities in stillbirth outcomes. Among others, experts from Australia, the United Kingdom and Holland conducted workshops and trained clinicians from around the U.S. and elsewhere in some of what they've learned about stillbirth prevention and dealing with its aftermath.

"Our goal is to spread this as much throughout the country as we possibly can," said center co-director Dr. Bob Silver. "There's a clinic in Manchester, England, called the Rainbow Clinic and these clinics are modeled after that. They all have slightly different names, so there's an opportunity to have more of these clinics in the United States."

Silver has spent more than three decades working with complicated pregnancies and helping women successfully deliver healthy babies after they've suffered a pregnancy loss. Those babies are sometimes called "rainbow babies," because they seem like a miracle after a storm. He told the Deseret News that stillbirths in the U.S., which are higher than in comparable-resource countries, are attracting more effort to make positive changes.

"There are a series of bills before Congress and there's increased funding available from the National Institutes of Health. The Centers for Disease Control and Prevention has several efforts ongoing. So I'm very optimistic, more than I've been in a long time, that the United States is going to do better and have lower rates of stillbirth and be more in line with other countries with similar resources," Silver said.

Stillbirths outpace other young deaths

Nearly 24,000 babies are stillborn in the United States each year, which is about one of every 160 pregnancies, according to a University Health news release that noted families of color are disproportionately affected. Miscarriages are spontaneous loss of pregnancy before the 20th week, while stillbirths occur when a mother delivers a baby who died in the womb or during labor after 20 weeks gestation. Those outnumber all the deaths of children ages 1 to 14. Two million babies are stillborn every year at 28-plus weeks gestation worldwide, the Deseret News earlier reported.

Silver said the deaths are due to obstetric complications, placentas that fail, genetic or physical abnormalities, infection, umbilical cord problems, the mother's medical challenges or hypertension, among other causes. Often, why the baby died is not determined.

The center includes the Utah Pregnancy After Loss stillbirth clinic. Besides loss, the clinic sees patients who had major pregnancy complications and need more care and emotional support in subsequent pregnancies.

"These patients and their families suffer major stress, often have depression and anxiety, often have PTSD, often struggle with self-blame," Silver said. They may struggle when they have further pregnancies and even after a successful birth, he said

'I don't think you ever get over it'

Money is one of the center's issues, but perhaps in ways folks don't consider. The center hopes to raise money to pay for care, lobby insurance carriers to cover certain kinds of care — to pay for evaluations of stillbirths and for mental health care, for instance. That's something they hope to lobby Medicaid to cover, as well. Money will also be needed to train more providers and to improve vital statistics data collection, among other things, Silver noted.

The center itself has several revenue streams, from National Institutes of Health grants to funding from the university, patient care and philanthropy. He said many of the important things they do don't generate revenue, so they'll need help with that as they go along.

Stillbirth is more common in rural than in urban areas, so the center hopes to help get better services to those communities and also to learn why such disparities happen.

In May, the Deseret News talked to several mothers who'd experienced stillbirth, but subsequently delivered healthy babies. They each described their fear during later pregnancies and their profound sense of loss from the stillbirth.

Nicole and Simone Atzeni are completely smitten with their baby Edoardo, born early this year. But she was nervous throughout the pregnancy, she said, because they'd lost a baby they called Baby P during the second trimester of that pregnancy. They had not yet decided on a name for the baby, who died in July 2021 amid what had seemed to be a healthy pregnancy.

"I don't think you ever get over it," Atzeni said in May. "I think you grow around it. Grief is interesting. I think you learn how to deal with it and it changes throughout the years, the different amounts that you feel it. You learn how to live with it."

'Our committment'

Among the center's 10-year goals:

• Cutting the U.S. stillbirth rate in half;
• Halving the disparities in stillbirth rates;
• Doubling the number of U.S. families that receive comprehensive bereavement support after a stillbirth;
• Making sure that at least three-fourths of the nation's stillbirths are evaluated to find the potential causes;
• Increasing public awareness;
• Positioning the U.S. as a leader in prevention, care and research;

"Our commitment extends far beyond the immediate loss," said Susannah (Zan) Leisher, who co-directs the Stillbirth Center of Excellence at University of Utah Health and is a stillbirth parent herself. "The journey of healing continues long after stillbirth or pregnancy loss."

She said families need emotional and psychological support sometimes for months or even years after losing a baby. "By connecting them with others who have walked this path and providing long-term mental health care, we can help ensure that they are never alone in their healing process."

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