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Raising the bar on stillbirth research in the United States

raising the bar on stillbirth
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SALT LAKE CITY, Utah — Bringing a child into this world can be a dream for some parents. For Jaymie Maines, that was certainly the case, until 38 weeks came around and she thought she was in labor.

“I got married at about 21 and tried for about four years to have my first baby. My husband and I were ecstatic when we found out that we were pregnant and we had a very healthy pregnancy," Maines said. “They got the ultrasound machine out and started looking for a heartbeat and at that time we found that there was no heartbeat and my son had passed away.”

Her son, James, was supposed to be brought into the world that day, but instead, was taken too soon. He was stillborn.

“It changes everything about you...every single day," Maines explained.

It’s been nearly 13 years and the pain remains prevalent.

“It changes your traditions. It changes the way I look at my children. It changes how I parent," Maines said.

Maines and her family still don’t know why he passed.

“Totally out of left field. I did not think that stillborns happened in 2009. I had no idea I thought it was an old-time thing," Maines said.

As a country, we’ve moved very slowly to reduce the rate of stillbirth in this country. Dr. Bob Silver, the chairman of Obstetrics and Gynecology at the University of Utah, says the first step is collaboration.

“The United States has a much higher rate of stillbirth than other countries with similar resources. In the United States it’s about 1 in 165 the last couple years; that’s about 25 to 26,000 per year," said Dr. Silver. “It was really important to me in hosting this year in the United States is to really try to call attention to stillbirth in the United States and also to have us try to learn from other countries that are doing a better job.”

For the first time, the University of Utah hosted the International Stillbirth Alliance Conference. It brought researchers, doctors, midwives and families from around the world together to learn from one another.

“It turns out that part of the problem in the United States is not doing complete evaluations for potential causes of stillbirth, and so, when somebody has a stillbirth, often the cause is not easily apparent or there might be several causes," Dr. Silver said.

One big takeaway: creating a standardized system for stillbirth data to reveal the real number of stillbirths in our country and incorporating a laundry list of tests that could be done to have more concrete answers. Some countries are ahead on that.

“They do a better job of capturing accurate data about stillbirths," Dr. Silver said. “Fewer than 20% of stillbirth cases in the United States have an autopsy and fewer than 20% have a complete evaluation. So, we find a cause in fewer than 50% of cases in the United States.”

Dr. Silver points out there are preventable stillbirths, but it’s a matter of funds, resources and prioritization. 

“Some of that involves taking things we already know and simply doing a better job of making sure that they are done for all pregnancies on a consistent basis," Dr. Silver said.

“I wish that we could make progress in preventing the preventable stillbirths because I believe he was a preventable stillbirth," Maines said.