When Your Child Has a Heart Condition…Here’s What Matters

Laurie Panesar, MD Director, Pediatric and Fetal Echocardiography Director, Fetal Heart Program  Stony Brook Children’s Hospital

Marybeth Heyden, DNP Coordinator, Fetal Heart Program  Stony Brook Children’s Hospital

What does a diagnosis of a heart condition in a child mean for a family?
We all realize that whenever we see a patient, whether we find a big or a small problem, that visit alters their lives forever. This could happen with a fetal echocardiogram uncovering an issue or an older child who until this point has seemed perfectly healthy. But we make one thing clear to the family right away: We are all in this together.

What do families first need to know?
They want to know if their child will live. In almost every case, we can assure them that we have the resources and the expertise to see that the problem is handled appropriately, whether it is through surgery and other interventions, careful management of the condition, lifelongfollow-through… whatever it takes. If we need to refer the family to another professional, we make sure that it is a good fit. Our go-to question when making a referral for a patient is: Would we send a member of our own family to this person? The answer has to be yes.

Families also need plenty of education on this new diagnosis. The shock of the diagnosis may make it difficult for them to take in all the information the first time, so often one of us will follow up the next day with a call or text, invite them to come back and talk, and even give them our personal cell phone numbers so they can ask questions as they arise. We assure them that there are no foolish questions or questions too trivial to ask. If it concerns them, it concerns us.

Is this level of service unusual?
Not for us. Our whole team is committed to the patient and the family 100 percent. We consider it a privilege to work with them and help them in whatever way we can. We say it from the beginning, “this is our child too” and we mean it. Our job is to advocate for this child and family in whatever way we can. And when we say family, we mean everyone in the family, including the “healthy” siblings who may need help handling the family situation as well.

How do you put the focus on quality of life?
Many times we try to take the medical piece out of the equation, and help the patient and family focus on quality of life. For example, when babies who have had neonatal repairs grow up, they see the surgical scars as just another part of themselves — not a stigma or a definition of who they are. We work with some patients with congenital heart issues their entire lives, so we get to know them really well. We do everything we can to help them have an unrestricted life, whether it is to play sports, if possible, dance, play, and have an unfettered teenage life.

Over the years, we have seen patients grow up, have children of their own and go on to live rich, productive lives. It can happen, and we try to make it happen for them. These patients are our family, and that’s how we treat them.