Every year, 26,000 babies are stillborn in America. In 2003, one of them was my son.

Monday, October 4, 2010

Searching for the Answers to Stillbirth

I came across an article written in March 2006 by journalist Suzanne Pullen of the San Francisco Chronicle and wanted to share some of it here with you. Ms. Pullen lost her son Avery in 2005 at 24 weeks.

She cites statistics I have mentioned in earlier posts and backs up my hope--the hope of stillbirth parents everywhere--that more research will be done into stillbirth. Here are a few excerpts from her article: (complete article can be accessed here)

"Searching for answers will provide little solace to many parents because so little research has been done on the causes of stillbirth -- classified by most in the medical community as the death of a fetus at or beyond 20 week's gestation. The efforts of many researchers have been stymied by the lack of standardized methods of reporting stillbirths and the collection of data from hospital to hospital, county to county, state to state. Fetal autopsies -- which are not covered by all insurance companies and have no national protocol -- are not required by law or hospital policy unless foul play is suspected."


"Stillbirth has been an extremely under-researched area," said Dr. Uma Reddy, an OB/GYN with the National Institutes of Health. "There is a huge gap in information."

Why? Why is stillbirth so under-researched? When will people understand that something needs to be done?

I spoke this morning with the husband of a friend. He and his wife lost their second child, a son, at full-term just one year ago. They don't know why he died. She is now pregnant with another son and they are, of course, terrified. Neither of them hail from the U.S.; both come from different European countries. My friend's husband, a scientist and Ph.D., told me how shocked he was at the statistics for stillbirth in this country. In their native countries cases of stillbirth are much, much lower. Why? He thinks, perhaps, medical professionals in their native countries have more awareness of the issue, pay more attention to risk factors.

Yes, it's anecdotal, but--what if he's right?

We can cut the numbers of babies stillborn every year down dramatically, if we, as a nation, only have the will.

What will it take?


Catherine W said...

It is frightening how little research there appears to be into stillbirth. I suspect that the 'diagnosis' of stillbirth covers a wide range of circumstances, in reality.

In the UK, just under 3,500 babies were born still in 2008. That is around a third of the total number of women who died from breast cancer in the same year. The amount of funding, research and awareness raising for breast cancer as opposed to stillbirth is disproportionate. Not that there should be less for breast cancer but stillbirth should attract more!

Looking at the return on your investment, cost per quality adjusted years of life and other such measures, it seems that research in this area could really pay off. If a stillbirth could be prevented, then imagine the benefit in those terms. If you could prevent the death of a very young baby you could potentially be 'purchasing' years and years of healthy life. I always use this argument to justify the cost of all the treatment J received (a lot of people in this country don't agree with treating very premature infants.) That she was expensive at the start but there is no reason to believe that she won't achieve a full, healthy life expectancy and the healthcare system will receive a good return upon its initial investment.

Hateful to think of it in such terms but needs must when the devil drives as they say. All healthcare systems are constrained by resources but, when I think of the ramifications of infant death and stillbirth, I can't help but think it deserves more.

And I obviously can't leave the office behind at the end of the day!

Virginia said...

Catherine, I agree. I understand there aren't resources enough to go around, but perhaps with wiser allocation, some of these issues could be solved, or at least improved. (And by wiser allocation, I mean let's not spend $5,000 on a toilet seat at the Pentagon...let's take the wasted money and spend it wisely.)