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Interviewees: Ruth Fretts, Harvard Medical School, Susan and Andrew DiBlasi, Oswego, NY. Produced by Joyce Gramza — Edited by James Eagan
Susan and Andrew DiBlasi lost their third son, Luke, to stillbirth in 2005. Weeks after the initial shock, they began to wonder if they would receive a birth certificate. "We thought we would get something in the mail," Susan recalls. But they found that their state, New York, is one of 25 states that do not issue certificates of birth ending in stillbirth. The DiBlasis say that refusal to recognize that Luke existed added to their grief. But it also demonstrated a major gap in research into preventing stillbirths, and finding out why it happens.
Despite the DiBlasis’ advocacy, and that of many other grieving families, the state of New York again failed to pass a "Missing Angels bill" this year. But many are now hopeful that national legislation will help. This year– 20 years after President Ronald Reagan proclaimed October the month to remember babies lost to miscarriage, stillbirth and neonatal death– national bills were introduced into both the House and Senate that would create new initiatives to research causes and prevention, including a national stillbirth registry.
"It’s long overdue. These parents just don’t have answers, they don’t have prevention strategies because the research can’t be done because the data’s not being collected," says Laura Reno, vice president of public affairs at First Candle , which is conducting letter-writing campaigns in support of the bills.
"There are 26,000 babies dying of stillbirth every year in the United States alone, and to date, very little has been done to figure out why," Reno says. “And many– 50 to 60 percent of them– are late-term, and that could mean that the baby was perfectly viable besides something going wrong in utero. So we’re never going to start saving lives until we start doing the research, and we can’t do the research until we start collecting the data.”
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Harvard researcher Ruth Fretts, M.D., is one who is trying to figure out why. Fretts, who has devoted her career to studying stillbirth, says two-thirds of stillbirths go unexplained.
"It is 10 times more common than SIDS, and many times there hasn’t been a thoughtful analysis of why the baby died. And so many times, parents are left with so many questions, a lot of regret," Fretts says.
The bills have provisions to raise awareness of early warning signs like decreased fetal movement. But other provisions, like standardizing autopsies after stillbirth, would help research the causes.
The DiBlasis say they declined an autopsy for Luke because they were told it would not reveal much. Fretts says without national protocols that’s common—and that it also makes many doctors reluctant to encourage or even ask for an autopsy.
"The providers who might feel bad looking after that patient might make an assumption of why the baby died, but they really lose a lot of information when they do that," Fretts says. She adds that there are a number of other useful tests, including examination of the placenta, that also need to be standardized.
Fretts points out that laws for reporting and prevention awareness of sudden infant death syndrome were initiated by grieving parents and have reduced the risk of SIDS.
First Candle’s Reno agrees. "Families interested in getting the word out were instrumental in creating the SIDS ‘Back to Sleep’ campaign," she says, adding that such initiatives have resulted in the rate of SIDS "being reduced by 60 percent over the past decade. We’re down to approximately 2100 deaths per year classified as SIDS."
Reno says research and more data collection are also needed to further reduce the rate of SIDS. The Senate version of the new stillbirths bill, sponsored by Sen. Barack Obama, includes research and prevention provisions for SIDS as well as stillbirth.
While it’s up to individual states to pass "Missing Angels" bills, the House version of the bill, sponsored by Rep. Peter King of New York, includes the finding that "more states should enact legislation that allows the issuance of a ’Certificate of Birth Resulting in Stillbirth’ when the pregnancy results in a stillbirth."
Fretts’ most recent research on preventing stillbirths was published in Seminars in Perinatology. 2008, and the Lancet, 2007.
Elsewhere on the Web:
Kick-Counting from the American Pregnancy Alliance
March of Dimes stillbirths page