(WPRI) — Chase Miceli, 2, has spent more than half of his short life inside a hospital, from holidays to birthdays. He’s now in the intensive care unit at Boston Children’s Hospital awaiting a heart transplant.
He has one of the most serious congenital heart defects, known as hypoplastic left heart syndrome. It’s where a child is born with only half a heart, his father Michael told Eyewitness News Thursday morning. He and his wife found out Chase would have the condition when they were 20 weeks pregnant.
Chase’s family lives in East Freetown, but they’ve been shuttling constantly back and forth between Boston and the South Coast as his treatment continues.
Out of every 1,000 births, eight babies will have some sort of heart condition, according to the American Heart Association. The Centers for Disease Control and Prevention says it amounts to 40,000 babies born each year with a CHD. February is Congenital Heart Defect Awareness Month, and Chase’s family is hoping to bring hope — by encouraging people to become organ donors.
“He’s really just a happy kid,” Michael Miceli said. “It’s remarkable how happy he is considering everything he’s gone through.”
There are advances in treatment all the time, but Michael wants to raise awareness for the youngest people with heart problems.
“There’s not as much funding for children with congenital heart defects as there is for adults with heart disease — just because there aren’t as many children with congenital heart defects as there are adults with heart disease,” he said.
Chase has already had two open-heart surgeries, and his tiny heart has now gone into failure.
That brought him to his extended stay in the ICU.
- GoFundMe: Help the Miceli Family with Expenses »
“We’re just hoping that an organ becomes available shortly, because he really needs it,” said Michael.
“When you have a child — it’s almost even when you find out you’re pregnant — you have their whole life mapped out. He’s going to be a lawyer. A doctor. The next president!
“And then when you find out such a devastating disease he has… You’re told to be happy he’ll be able to just stand up.
“It really changes things.”