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Many survivors of childhood heart surgery are met with unexpected – and often undiagnosed – educational and behavioral challenges as they get older. With the recent announcement of the Charlotte region’s first neurodevelopmental program for these children, two experts from Levine Children’s Hospital and Sanger Heart & Vascular Institute – pediatric cardiologist René Herlong, MD, and pediatric cardiothoracic surgeon Paul Kirshbom, MD – have responded to some of your most pressing questions.

What is the neurodevelopmental program? And why is it important?

Dr. Herlong: The neurodevelopmental program is a program that evaluates the development, intellectual capacity and physical capacity of a child. It’s important to have because cardiac kids have different needs – different deficits – than other children. The ultimate goal is to help these kids and their families to understand, to cope and to become better at handling their developmental and educational needs.

Dr. Kirshbom: A program like this will be designed to address the sorts of problems that these kids are going to face as they get older.

How are the futures of “heart kids” different now from the past?

Dr. Kirshbom: Forty years ago, the challenge was getting these kids to survive. Now, the majority of cardiac kids survive, and the challenge has moved from inpatient critical care to lifetime issues.

Dr. Herlong: Pediatric cardiologists are now being faced with the good problem of dealing with the outcomes of having cardiac kids survive.

Now that they are surviving, what challenges are heart kids facing as they enter adulthood?

Dr. Herlong: They are unearthing problems that we never had to deal with before. Those problems include difficulties finding jobs because of neurodevelopmental problems that weren't dealt with previously, as well as more subtle things.

Dr. Kirshbom: As you reach adulthood, there are other challenges that come into play – insurance, employability. If a program like this can focus on these problems and help these kids move past them, I think it'll help them a lot when they transition into adulthood.

What are some of the specific neurodevelopmental challenges?

Dr. Herlong: I think, conservatively, 50 percent of our patients who had infant or newborn heart surgery – and all the experiences that revolve around that – are going to have some sort of neurocognitive deficit. This includes understanding what they’re seeing, expression and reception of language, fine and gross motor skills, executive functioning, judgement, and being able to plan things.

Dr. Kirshbom: Often, it's behavioral, where they have anger management issues. And that’s probably tied into the fact that they're having trouble with their attention, so they're frustrated with their inability to follow.

Why are heart kids at a higher risk for these developmental problems?

Dr. Herlong: Cardiac kids have undergone a number of procedures in the first year of life – and even in the first weeks of life. Those involve prolonged hospitalizations, multiple procedures with sedation and anesthesia, disruption in the child’s normal development and disruptions in their social environment. All those things put these kids at risk for problems in their development.

What can patients expect from the neurodevelopmental program?

Dr. Herlong: There will be services and specialists available, including pediatric cardiologists, social workers and dieticians. There will be neurocognitive specialists who can work with schools to develop individualized educational plans and implement those plans in terms of resource allocation. There will also be occupational, physical and speech therapists.

Dr. Kirshbom: A program like this brings everybody together in the same place, same time. With one visit, patients will get everything done, find out what their issues are, and work on them.

How will this program address the challenges of early diagnosis?

Dr. Herlong: It's important to diagnose these things early because you can then begin early intervention at a time when the brain is still developing. With the program, patients will be screened early – before they develop problems that are obvious to their teachers or parents.

Dr. Kirshbom: It’s very difficult to address these sorts of problems in a newborn. The real problems start to appear when they get to school age. The neuropsychologist that will be at the heart and soul of this program will have a whole variety of tests that focus on different areas of development. That’s the sort of specialization these kids need to be the best they can be.

How will this program improve the services offered by Levine Children’s Hospital and Sanger Heart & Vascular Institute?

Dr. Herlong: This program is going to help our patients and their families understand subtle developmental problems and begin to treat them early on. It’ll also provide us opportunities to learn more about the neurological, developmental and cognitive processes of these patients. There’s no such program for neurodevelopmental needs of our patients anywhere in this region – or even this part of the country. Families will want to come here because they will have access to resources that don’t exist in many other places.

Dr. Kirshbom: For parents, having this solution for their child’s long-term care is going to set our program apart.

What does The HEARTest Yard’s support mean for the neurodevelopmental program?

Dr. Herlong: The program would absolutely not be able to exist without The HEARTest Yard's support. The support that we get from Greg and Kara Olsen and their foundation is life-changing for most of our patients. The things that they are offering through their foundation are not available otherwise.