Congress urged to pass SIDS, stillbirth measures

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WASHINGTON - Newborn survival advocates roamed Capitol Hill early this week urging Congress to act on measures to improve investigations and data about infant deaths and stillbirths.

"We're not using what our lost babies can teach us to help avoid this happening to someone else,'' Laura Crandall, whose daughter, Maria, died in her crib of unexplained causes at 15 months of age, told a forum held for congressional staff Tuesday.

Crandall and more than 30 other parents and family members affected by stillbirths and unexplained infant deaths are advocating passage of the Stillbirth and Sudden Unexplained Infant Death Prevention, Education and Awareness Act.

Crandall coordinates a childhood-death program for the C. J. Foundation for SIDS founded by former CBS Radio Chairman Joel Hollander and his wife, Susan, after the 1993 death of their daughter, Carly Jenna. The foundation helped organize the legislative briefing.

The legislation, introduced last year by Sen. Frank Lautenberg, D-N.J., and Rep. Frank Pallone, D-N.J., now has eight co-sponsors in the Senate and 26 in the House, but supporters are hoping to widen the base of support to improve chances that it can be enacted before the end of the session.

Annually there are nearly 5,000 deaths of babies aged 1 month to 1 year that are not tied to a known illness and at least another 200 who are 1 year to 4 years of age, who like Maria Crandall, die without any obvious cause. There are also more than 25,000 stillbirths in the U.S. each year, half of them with no known cause.

The bills would expand two programs already under way through the federal Centers for Disease Control and Prevention:\

-- Adding about 10 states to a pilot database on stillbirths established in Iowa and five counties around Atlanta, and

-- Making nationwide a registry of infant deaths that's collecting information now only from New Jersey, Georgia, Michigan, Colorado and New Mexico.

The legislation would encourage states to improve on-scene investigations and autopsies of infant deaths plus provide some funding to help train investigators and expand and improve infant and child-death review programs. It would also support national educational and public awareness campaigns to alert parents and caregivers to the risk factors for infant and stillbirth deaths, as well as increase support services for bereaved parents.

Deborah Robinson, a SIDS parent and infant death investigator from Seattle noted that "this is the first national legislation dealing with sudden infant death in 30 years, and there has never been any national focus on early childhood deaths and stillbirth. This is long overdue."

Judy Rainey, a SIDS parent and advocate who serves as Lautenberg's deputy chief of staff, said "we can make a huge impact on infant mortality if we can deliver a better national message about how babies are placed to sleep, but to support that we need the best possible investigations and data."

With an estimated cost of $10 million to $15 million to implement, "this is small change compared to a lot of federal programs," said Dr. Joan Kuntz, a Connecticut emergency physician and Maria Crandall's godmother. "But in terms of the impact these losses have on families, doctors, emergency workers, everyone, you can't put a price tag on the importance of understanding the causes of these deaths.''

On the Web:

For more information about SIDS, check out Scripps Howard News Service's investigative report "Saving Babies: Exposing Sudding Infant Death in America" at:

http://scrippsnews.com/projects/saving-babies-exposing-sudden-infant-dea...

(Contact Lee Bowman at BowmanL(at)shns.com.)

(Distributed by Scripps Howard News Service, http://www.scrippsnews.com)