March 3, 2009

Autopsy Unlocks Clues For Stillbirth

Erin Fogarty Owen is celebrating her current pregnancy with the memory of her stillborn daughter Clare close at hand. For Erin, the hardest part of Clare's death is the fact the family still doesn't know what caused it.

According to an Associated Press report, for 1 in 3 babies that are stillborn doctors simply can't find an explanation. In the U.S. 25,000 babies are stillborn every year.

Birth defects, problems with the placenta, and too little fetal growth account for many stillbirths. But there's been no progress pertaining to why babies like Clare Owen are stillborn despite intense testing.

New guidelines for obstetricians encourage them to talk with parents about allowing an autopsy. The more information doctors have, the better they can address the causes.

The American College of Obstetricians and Gynecologists guidelines are happening as bereaved parents and child advocates try to stop the silence that surrounds those deaths.

"People don't want to frighten their patients near the end of pregnancy," says Dr. Ruth Fretts of Harvard Vanguard Medical Associates and the Harvard Medical School, who led the new guidelines. "So basically the issue about late stillbirth is generally not brought up. We've been afraid to talk about it."

Fretts wonders if older and other higher-risk mothers should be induced before their due dates, or if women need to count their babies' kicks in late pregnancy.

"We need some answers," says Owen, of Arlington, Va. "It all starts at the bedside of the grieving parent who's just been told her baby is dead."

Black women have roughly twice the rate of stillbirths as other U.S. women - as well as mothers age 35 and older, even if they seem just as healthy as younger women. Obesity, diabetes and high blood pressure also increase the risk.

Fretts estimates a third of mothers never get asked about an autopsy, and there's no official number on how many are performed. Families who reject a full autopsy should be offered alternatives, such as full-body X-rays and biopsies, the guidelines say.

The Owens spent seven hours with Clare to say goodbye before her autopsy.

Making the choice harder for families is the fact that most insurance companies don't pay, and the cost can reach $1,500.

"That isn't good enough," says Owen, frustrated that Clare's autopsy merely ruled out known stillbirth causes. "We need to get together and come up with better answers."

Congress is weighing in on the issue.

Sen. Frank Lautenberg, D-N.J., is backing legislation that would increase stillbirth research and public awareness.

Meanwhile, Owen is hanging onto sympathetic care from a high-risk OB practice that allows repeated reassurance sonograms during her new pregnancy.


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