WASHINGTON — Lawmakers have approved legislation that, inspired by a Bethel Park family, pledges more federal research into Sudden Unexplained Death in Childhood, a confounding category of death that claims the lives of 400 children each year and is the fifth-leading category of death in young children.
The bill, called the Scarlett’s Sunshine on Unexpected Death Act, was approved unanimously by the U.S. Senate this week after passing the U.S. House of Representatives. It was named for Scarlett Lillian Pauley, a 16-month-old girl who died of unexplained causes in 2017.
The bill, if signed by President Donald Trump, requires more research and standardizes autopsy investigations into Sudden Unexplained Death in Childhood, which is defined as the death of a child at least 1 year old whose cause remains unexplained even after a thorough investigation.
An additional 3,600 infants are lost each year to Sudden Unexpected Infant Death, or SUID, which is the sudden death of an infant under 1 year of age that did not have an obvious cause.
The lack of answers can be agonizing for families that lose infants and children.
Stephanie Zarecky, Scarlett’s mother, has pressed Congress to require a deeper dive into the issue. In January, three years to the day since she lost her daughter, Ms. Zarecky testified before the health care panel of the House Energy and Commerce Committee. She is currently the ambassador program and public relations manager for the SUDC Foundation, a New Jersey-based nonprofit.
On Friday, Ms. Zarecky, she said she hoped the bill would help mean her daughter’s “memory will live on in history, helping countless families and children for generations to come.”
“To say this is bittersweet is an understatement,” she said. “We wish so badly there was never a need for it and she was here with us, making history in her own way. We hope people will want to learn more about Scarlett and SUDC, and that one day no more families will know this tragedy firsthand.”
The bill — introduced by Sen. Bob Casey, D-Pa., in the Senate and supported by Rep. Mike Doyle, D-Forest Hills — directs the U.S. Department of Health and Human Services to assess updates to a death investigation reporting form. And it requires the department to submit annual reports to Congress including a count of deaths and actions taken to prevent them.
“We must do more to understand why certain infants and young children have died unexpectedly, and to learn what is causing these deaths,” Mr. Casey said in a statement Friday.
The legislation was approved along with a spate of last-minute bills lawmakers are pushing through before the end of the year.
Daniel Moore: dmoore@post-gazette.com, Twitter @PGdanielmoore
First Published: December 18, 2020, 6:22 p.m.
Updated: December 18, 2020, 6:43 p.m.
