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Stories of everyday strength from resilient hearts

Join us in celebrating our patients’ strength and resilience after complex heart surgery.

Heart Month Stories | Kevin Nolan

Kevin Nolan III

When we met Kevin last year, he was doing well after having a cone procedure in 2016 to repair his tricuspid valve. Kevin’s parents had initially been referred to Dr. Wayne Tworetzky of the Boston Children’s Hospital Fetal Cardiology Program so Kevin could receive an experimental prenatal treatment for Ebstein’s anomaly, a rare heart condition that causes leakage of the tricuspid valve and backup of blood flow into the heart.

How is Kevin doing now?

He’s doing great. He’s in first grade and loving it. He’s still super active, jumping around all the time just like any other 6-year-old. We just welcomed another baby, Landon, this past November and Kevin is a great big brother. He loves holding him and helping us take care of him.

Is he doing any activities?

Yes, he’s looking forward to starting baseball in the spring — he played t-ball last year and really liked it. He’s still swimming and enjoys that, too. The swimming has really helped build his confidence, especially with feeling more comfortable lying on his back, which used to make him nervous. He doesn’t dance anymore, but he took a gymnastics class in the fall. He loves hanging out with his friends and has no trouble keeping up with them.

How is Kevin’s heart?

Everything seems great. He still sees Dr. Tworetzky every July for a check-up. At his last visit, we learned he could stop taking baby aspirin, his last medication. He was taking it for maintenance for his heart, but he was having some side effects like bruising and bloody nose. So now he’s completely medication free. If you didn’t know his history, you’d never know he was born with a heart condition.

Do you have any advice for other parents of kids with heart disease?

My advice to new parents is to take it one day at a time. Enjoy the good days and be strong for the tough days. It is not easy being a parent of a child with a heart condtion and it has taken me some time to realize that his heart defect is a small part of who he is. Also, never stop advocating for your child. Seven years ago this month we were told there was no hope for Kevin — how our world be different today if we didn't advocate for that second opinion at Boston Children's Hospital.

For 150 years, families have come from around the corner and across the world, looking to Boston Children's for answers. This is the place where the most difficult challenges are faced head on, where the impossible becomes possible, and where families in search of answers find them.

Sandra L. Fenwick, CEO

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