Legislation aimed at improving the quality of information collected on fetal, infant and childhood deaths got its first review during a congressional hearing Wednesday.
The bill, called the Sudden Unexpected Death Data Enhancement and Awareness Act seeks to upgrade and expand a national system for tracking infant and childhood deaths.
Every year, more than 4,000 babies die suddenly and often without explanation, while an estimated 26,000 stillbirths occur in pregnancies of 20 weeks and longer, at least half unexplained.
The lack of reliable reports about those deaths from a patchwork of investigators carried out by coroners, medical examiners, police, social workers, physicians and others impedes research into possible causes and preventive steps, said Laura Crandall, director of the Sudden Unexplained Death in Childhood program at the CJ Foundation for SIDS. The death of her own 15-month-old daughter Maria, in her sleep in the summer of 1997 was ruled unexplained two years later.
The bill "will improve the collection and analysis of standardized data that is only available in the first hours of the investigation ... and thereby maximize the ability to learn from every one of these tragic deaths," Crandall told the health subcommittee of the House Energy and Commerce Committee. "We have to prioritize getting these investigations done thoroughly."
After reviewing records of more than 40,000 infant deaths, Scripps News reported in 2007 that the investigation and classification of such deaths has been erratic for decades, often finding no specific cause. The resulting vital statistics give little insight into why babies actually die.
In reaction to those findings and subsequent medical research, the legislation was first introduced in 2009 by the late Sen. Frank Lautenberg of New Jersey and Rep. Frank Pallone, D-N.J., the senior Democrat on the subcommittee. Provisions expanding a national database on stillbirth were first proposed in a bill introduced in 2008 by then-Sen. Barack Obama. The bill was among several public health measures considered by the subcommittee Wednesday.
The measure would establish and encourage national guidelines for autopsies of infants and children who die unexpectedly; provide grants toward more specialized training for death scene investigators; enhancing the Centers for Disease Control and Prevention's surveillance of infant and child deaths from a current 9 states in a pilot study to include all states and an expanded stillbirth registry to include a representative sample of about 10 states.
It would also expand support for bereaved families, education and community programs to improve infant safety. It would authorize spending up to $30.7 million on the programs over the next five years. During the hearing, Pallone noted that it might not be possible to fund the entire bill, and Crandall stressed that getting standards and training set for infant death investigations and collecting better data to back research should be the top priority.
The bill is also supported by National Association of Medical Examiners and several other infant survival groups, including First Candle and Cribs for Kids.
"Hopefully we are one step closer to putting these causes of death on the map where they belong," said Kelly Mariotti, chief executive of First Candle. "We see first- hand, every day, how devastating these deaths are to families. They want and need answers."
"This bill will enhance our prevention efforts through improved investigations and increased awareness," said Judith Bannon, president of the infant safe sleep advocacy group Cribs for Kids. "We need this data to determine if our advocacy efforts are being channeled effectively."
(Contact Scripps News correspondent Lee Bowman at BowmanL@shns.com)