Colorado lawmakers discuss updating decades-old newborn screening bill

State

Each year, nearly 67,000 babies are born in Colorado. Of those, about 2,000 will fail an initial newborn hearing test.

Right now, Colorado lawmakers are discussing a proposed bill that would provide families of those children with more guidance and better followup care.

“It’s a tricky system to navigate at times,” Allison Cunningham, a pediatric audiologist at Children’s Hospital Colorado, said.

House Bill 18-1006, otherwise known as the Newborn Screening Bill, is currently being discussed in the House Appropriations Committee.

The newborn screening process hasn’t been updated in 20 years, and some say it’s long overdue.

Right now, parents can opt to have their newborns tested for genetic, cardiac, metabolic and hearing issues at birth.

Medical experts say identifying hearing loss early is crucial to a child’s success.

“There’s an impact on cognition, there’s an impact on language, as well as social and emotional outcomes, which has far-reaching implications for vocation, education, and living a life as a productive member of society,” Cunningham said.

Unfortunately, many parents get lost in the current system, and their children don’t receive the care they need until later in life.

“I was not identified until I was age 4, which is past what we consider a critical period for that speech/language development, and as a result I spent a lot of my time doing catch-up,” Cunningham said.  

Johnny Mcleod, 4, is one of the lucky ones.

“He, to me, just exemplifies a system that works,” Cunningham said.

Johnny failed his initial hearing test at birth, and at first his parents had no idea where to turn.

“That’s the scariest thing,” Laura Mcleod, Johnny’s mother, said. “At 24 hours you’re told your kid can’t hear. Well, now what? We were almost paralyzed with fear. We just didn’t know where to go next and how and if we wanted to know the truth.”

Luckily Johnny and his family were sent to Children’s Hospital Colorado for further evaluation.

“It wasn’t until we got to Children’s Hospital that then the services in town kind of scooped us up and showed us what we needed to do,” Mcleod said. “Before we knew what was really going on, I was just thinking of all the negatives, what he’s not going to be able to do, and are we going to be good enough, strong enough, parents to guide him through this challenging world?”

At three months old, Johnny was fitted with his very first hearing aid.

“Once he got the hearing aids he was more alert and more responsive and we started with in-home therapies and he took to that pretty quickly,” Mcleod said. “Kids with hearing loss just learn differently, and if you don’t know how to help them learn, they’re just going to miss out on so much. They’re just going to be so far behind, and because we were able to start him right off the bat learning the way that works for him, he’s just kind of led the way.”

Johnny sees his audiologist often, and she says he’s adapting just fine.

“His language, his cognition and his social and emotional development is within the normal range, and he’s just an awesome kid,” Cunningham said.

“He’s really interested in space,” Mcleod said. “He wants to be an astronaut. He’s really interested in engineering, and so we’re trying to foster that development any way we can.”

“His future is going to be great,” Cunningham said.

The medical community wants Johnny’s success story to be the norm, not the exception, and they are hopeful this new bill would pave the way for that to happen.

The bill does have bipartisan support and would create funding for followup care through a $4 hospital fee.

If the bill makes it through the House, it will then move on to the Senate for discussion there.

Local representatives Rep. Larry Liston and Sen. Bob Gardner support this bill. 

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