Bill calls for coverage of heart, brain screenings for kids
By Ethan Forman Staff Writer
HADLEY GREEN/Staff photo James and Chelsea Rosato of Danvers talk about the death of their son, JJ, and efforts to create a bill that would require health coverage for brain and heart screening in children
DANVERS — It was a Saturday in early December 2015, and James Anthony “JJ” Rosato Jr., a third-grader at the Great Oak Elementary School who loved playing youth hockey, was at a Boston University hockey game for a birthday party.
While at the game, JJ told his dad, James Rosato, of his desire to play for the hockey powerhouse someday.
“He was banging on the glass, and when they tied it all up, he looks back and says: ‘Daddy, I want to come here one day.’ So I just said: ‘Just keep going and you keep doing well in school and you’ll do it, JJ,’” said Rosato, a lineman for Danvers Electric.
The boy’s dream of playing BU hockey will never be realized. Rosato and his wife, Chelsea, found JJ dead in his bed the next day. It was Dec. 6, 2015. JJ was 8.
“He just went to sleep and never woke up,” said Rosato, who has a portrait of his late son tattooed on his forearm.
First responders tried to revive JJ, but they were unsuccessful. Almost two years later, the Rosatos do not know why JJ died.
The Rosatos did a lot of research looking for answers. They became involved in a nonprofit called Sudden Unexplained Death in Childhood Foundation, which provides support and advocacy for parents dealing with the death of a child older than 12 months for which there is no explanation after a thorough investigation.
However, the Rosatos want to take things a step further.
They wonder if some silent, undetected heart defect or brain injury might have contributed to JJ’s death.
A need for screening
About six months after JJ died, Rosato came up with the idea for legislation calling for insurance companies to cover tests of hearts and brains of children as young as 5, about they age they start to play youth sports.
The parents say these screenings, an echocardiogram and concussion analysis, are something children should get at least every two years. Rosato said JJ’s younger siblings, Jocelyn, 5, and Joey, 8, have been tested since JJ’s death.
“Why not be proactive and have kids tested before it happens instead of after it happens?” Rosato asked.
Rosato said with an echocardiogram, an ultrasound of the heart, doctors can look at a heart’s chambers and see if there is a defect, such as a hole or a leaky valve.
However, according to some news reports and a March 8, 2011, blog post on Boston Children’s Hospital’s pediatric health blog, “Thriving,” there is debate as to whether echocardiograms should be used to screen student athletes. It’s possible the test may not catch problems in younger children. And, the post points out, athletic-related deaths are rare, about two a year for a state the size of Massachusetts.
The heart ultrasound, Rosato said, would especially help coaches, parents, doctors and paramedics. If a child is tested and a problem is discovered, and that child falls on the ice or passes out on the field, coaches will know what they are dealing with and can respond with CPR.
Rosato said the test should be mandatory periodically when kids play sports.
“High school kids get it, awesome, great, fantastic,” James Rosato said of older players who get checked for a concussion in high-school sports. “I think it’s got to start smaller.”
Legislation in the works
The couple have reached out to state Rep. Ted Speliotis, D-Danvers, on a bill that would mandate insurance companies pay for biennial echocardiograms and concussion analysis for kids between the age of 5 and 18.
Speliotis has sponsored the bill, and the couple plan to appear at a hearing Nov. 28 at the Statehouse before the Joint Committee on Financial Services.
“What we are doing is mandating coverage,” Speliotis said. The tests themselves would not be mandatory.
Speliotis said he knows passage of a bill in JJ’s name will take a long time, and face opposition from insurance companies and the industry. A bill to get insurance coverage for Lyme disease treatments took 12 years, Speliotis said.
However, the longtime Danvers lawmaker, who is chairman of the powerful House Committee on Bills in the Third Reading, said he hopes the legislative process will shed light on the issue. The hearing may spur discussion or research.
“It takes an individual or a family like Jimmy’s to step up and say: ‘I want to find an answer.’”
The Rosatos have recently had to re-live what happened to them. A Danvers family they know has been dealt a blow with the unexplained death of 18-month-old Kayla Rose Caron, who died Oct. 10 while napping at a baby sitter’s home.
A Sudden Unexplained Death in Childhood awareness event was held Nov. 4 at the Danvers Fire Department. The event featured a banner with a collage of faces of children, including JJ’s, who had died. There are three banners with 120 children categorized as SUDC in circulation worldwide as part of the SUDC Foundation’s Banner Project.
“We’ve just thought that there is a lot of kids that are passing, and from what I take, with unknown causes, unexplained deaths,” Rosato said. “At some point, I sat down and I said to my wife, I said, ‘You know what, I definitely have to make a difference.’ And, after what we went through that day, I said to myself … ‘I do not want any other parent to go through this,’ and I will fight so that way they won’t.”
Staff writer Ethan Forman can be reached at 978-338-2673, by email at firstname.lastname@example.org or on Twitter at @DanverSalemNews.
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