Gathering consistent data on infants and young children who died unexpectedly is a first step toward figuring out why they died.
That was the message Sen. Charles Schumer relayed at a news conference Wednesday at the Steven and Alexandra Cohen Children's Medical Center in New Hyde Park. The Democratic senator was there to show his support for a bill that would require all states to use the same protocols for scene investigations and data gathering on sudden, unexplained infant and child deaths.
About 4,600 infants die from unexplained causes each year, according to the Centers for Disease Control and Prevention. In New York, more than 100 infants died in 2011 from unexplained causes, the CDC said. Another 200 children between the ages of 1 and 4 also die without a clear cause of death each year nationwide, according to Laura Crandall, director of the nonprofit Sudden Unexplained Death in Childhood Program.
Each state now does scene investigations, medical exams and data-gathering differently, Schumer said.
"Inconsistent practices in investigation and cause-of-death determinations hamper our ability to monitor trends, determine the causes of death, pick out risk factors or warning signs and design programs that could help prevent future deaths," he said.
The bill, which passed the House last month, would set national guidelines on death scene and autopsy protocols and data gathering. Schumer said he would push to pass the bill in the lame-duck session after the November elections.
Danna Richardson of Merrick said the cause of her daughter Alex's death at age 2 in February 2006 was listed as pneumonia, although the toddler showed no signs of it.
"Even though they couldn't find a reason [for her death], they called it pneumonia," she said. "She wouldn't even be listed as an unexplained death."
That, she said, doesn't help future research.
Dr. Richard Friedman, a pediatric cardiologist at Cohen, said that being able to tell a family why their child died is not only important "for closure, but can potentially prevent another death in that family" if there is a genetic cause.