For Snowmass mother, Senate bill is personal | AspenTimes.com

For Snowmass mother, Senate bill is personal

Pictured is the Genshaft family of Snowmass Village — Alyssa, Eli, Sophie, Ben and Max. Max died suddenly in his sleep on Jan. 18, 2013. The cause of his death remains a mystery, and Alyssa Genshaft is trying to draw attention to a Senate bill that would implement a uniform protocol for investigation sudden infant deaths and stillbirths.

Hard-core political junkies probably don't know about the Sudden Unexpected Death Data Enhancement and Awareness Act, but it's at the top of Alyssa Genshaft's mind.

Genshaft, of Snowmass Village, has been working with U.S. Sen. Michael Bennet's office to see the bill passed. For parents such as Genshaft who are supporting the no-cost legislation, it's personal.

Genshaft's son Max died in his sleep Jan. 18, 2013. By all accounts, he was a happy, healthy 17-month-old boy. But since his death, his mother and his father, Ben, have yet to get a conclusive cause of his death. The official word from the coroner was that Max's death was undetermined.

Not having an explanation for their child's death only compounded the grief.

"The coroner said he thinks he had some kind of seizure," Genshaft said. But nobody's absolutely sure what led to Max's death.

Unlike sudden infant death syndrome, which is the leading cause of death for babies 1 month to 1 year old, sudden unexplained death in children refers to the fatality of a child older than 12 months.

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Genshaft said that while the grief doesn't wane, she has managed to find some comfort and strength through an organization called Sudden Unexplained Death in Children, a support group for families who have lost children for unexplained reasons.

She learned about the Sudden Unexpected Death Data Enhancement and Awareness Act, which would establish protocols for the Centers for Disease Control and Prevention in the investigations of sudden infant deaths and stillbirths. Senate Bill 2746 was introduced by U.S. Sens. Sherrod Brown, D-Ohio, and Kelly Ayotte, R-N.H., on July 31.

Last month, Genshaft, as the Colorado representative for rallying support for the bill, spoke to a legislative aid for Bennet. Bennet has agreed to co-sponsor the bill and has sent letters indicating his intent to Genshaft and her supporters who contacted him.

"In the United States, there are more than 25,000 stillbirths each year, half the time with no known cause," Bennet wrote. "There are 4,800 unexpected deaths in children younger than four years old each year. We must do more to protect this incredibly vulnerable population."

Bennet's letter also explained that the bill would "help reduce the number of unexpected infant deaths in America by calling for new research and education on stillbirths and sudden unexpected infant death."

The bill has been referred to the Senate Committee on Health, Education, Labor and Pensions, of which Bennet is a member.

The bill would establish uniform standards throughout the U.S. for collecting information on infant deaths and stillbirths. Genshaft said Snowmass police, Pitkin County sheriff's deputies and the Snowmass Wildcat Fire Department were "amazing" when they responded to the call about Max.

"But we live in a rural area," she said. "And because we live in a rural area, we don't see as much of these (infant and child deaths)."

With clear protocols in place, more details could have been revealed about Max's death and could possibly could have helped the prevention of future infant and child fatalities, Genshaft said.

"I do feel that local officials could have helped on an even broader level had the Sudden Unexpected Death Data Enhancement and Awareness Act been in place," she said, explaining that the bill would provide standard autopsy protocol, death scene investigations and data collection in sudden infant deaths.

Genshaft said doesn't want any family to experience what hers and others have. The bill would take a major step toward that, she said.

"It can save any other kids or parents from going through what we've gone through, because it doesn't make a lot of sense to put your healthy kid to bed and they don't wake up," she said. "How do you make sense of that? For all of these families, the pain is the same. People who lost their child 13 years ago, their pain is just as fresh as our pain."

rcarroll@aspentimes.com