Support for Parents
Given the anguish and confusion that CHD bring, it's so important for parents to look for support—from family, friends, organizations, and those who've been down this road before.
Foley advises parents to get an understanding of what they're dealing with. "In our case, it was, 'We've got this diagnoses, and yes, it's devastating and incredibly life changing, but it's not a death sentence.' I struggle using that word because in some cases when a child is born with a CHD and it's not caught in utero, after delivery or in the pediatrician's office, a child passes away because it wasn't detected. But in the cases when they know what's coming, it's important parents understand the causes, defects, and treatments. They need to understand children with CHD are never cured—the defects are repaired, so there's always follow-up procedures, lifelong medications, therapeutic services, and so on."
Megan Van Pelt, Board President of the Children's Heart Foundation, shares with parents the best advice she got years ago from a nurse after her son, Jack, was diagnosed: "She took both my arms, looked me in the eyes and said, 'You will get through this. Don't ever be afraid to ask questions. Be Jack's advocate.' And I stuck to that throughout this long road. So, if in your gut, you feel that something is wrong, you're probably right. Doctors and nurses are human. IVs go bad; there are lots of other babies in need in the hospital, so you need to stay focused on the care your child is receiving." She recommends the Children's Heart Foundation's book, It's My Heart, to help parents make sense of very complicated medical terms and procedures.
And above all else, hold on to hope. "The Children's Heart Foundation continues to fund critically needed research; lives are saved and parents get the pleasure of watching their children grow to become adults," says Bill Foley, executive director of The Children's Heart Foundation.