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Imagining a Brighter Future

Like many parents of “heart kids,” Brittany Jackson knew upfront that there would be delays – but not to what extent.

According to Levine Children’s Hospital pediatric cardiothoracic surgeon Paul Kirshbom, MD, this isn’t unusual. “It's very difficult to identify subtle problems in a newborn,” he explains. “The real problems for cardiac kids crop up when they get to school age.”

So when Brittany’s son Gray started kindergarten – a cherished milestone for any kid – she knew it was even more momentous.

“It’s time for real life,” Brittany remembers thinking with more than a little apprehension. “It’s time to see how his learning will go.”

A Difficult Start

Just days after his birth, Gray was diagnosed with heart disease. He spent his first month of life in the cardiac intensive care unit at Levine Children’s Hospital. In a matter of months, he’d received four heart surgeries – the last of which was a heart transplant.

“We were in shock when we found out he needed a heart transplant. I'll never forget where we were sitting or how it happened or what was said,” recalls Brittany. The Jacksons waited about a month for Gray’s new heart, and it couldn’t have come at a better time. “Had we not gotten it the day we did, I don't think he would have made it through the weekend,” she says.

Since the miraculous timing of Gray’s heart transplant, his heart has been relatively healthy. But there have been other challenges. For heart kids like him, neurodevelopmental struggles are an all-too-common reality.

One expert, James René Herlong, MD, a pediatric cardiologist at Levine Children’s Hospital, estimates that at least half of all survivors of infant heart surgery will experience some sort of neurocognitive deficit. “It's important to diagnose these things early,” he says, “because you can then begin early intervention at a time when the brain is still developing.”

Unforeseen Challenges

The last five years have been a struggle for Gray. He didn’t speak until he was three and a half. He’s battled constant sleeplessness and lingering illnesses. He has attended more speech, occupational and physical therapy sessions than Brittany can remember.

“We knew we had a lot of catch-up,” says Brittany, “but I don't think we ever understood to what degree. Nobody really prepared you for that.”

Even now, the team at Levine Children’s Hospital – whom Brittany refers to as “part of the family” – continues to play a major role in Gray’s life decisions. With their help, Brittany has found a school that understands how to deal with the many complications of being a heart kid. Gray even uses his mom’s phone to FaceTime “Uncle Joe,” his nickname for Joseph Paolillo, MD, a pediatric interventional cardiologist at Levine Children’s Hospital who’s been closely involved in his care.

“I really can’t imagine having gone through the process without them,” says Brittany. For parents like her, it’s the small things that bring big rewards – like watching Gray ride his bike for the first time, or hearing him read his first words, or seeing him learn to grip a pencil.

A Silver Lining

By offering seamless access to specialists and resources, a neurodevelopmental program would help both kids and their families better understand their developmental and educational needs. From learning disabilities to behavioral challenges, Dr. Kirshbom says, “A program like this will be designed to address the sorts of problems that these older kids are now going to face.”

As Gray enters his schooling years – which can bring to light certain developmental challenges – Brittany is optimistic that one day her son will be able to live like every other child. She is also hopeful for what a cardiac neurodevelopmental program can offer for children like Gray and says it would be “life-changing.” Beyond just helping their family coordinate care, the program will bring the Jacksons peace of mind.

“As a parent, you always have so many questions: What do we do now? Are we doing the right thing?” says Brittany. “Now, we will have those answers.”