Full Circle: Mom’s history with CHD helps her support Heart Warrior

When Ayin was diagnosed in utero with a congenital heart defect, his mom Karen had some idea of what it meant for their family. She herself was diagnosed with Pentalogy of Fallot (POF) in the 1970s and had it repaired when she was 10. What she hadn’t realized was what excellent advocates her own parents were for her as a heart warrior kid.

“So much was happening behind the scenes that I never knew about,” Karen said. “As a child, I tried to protect them, but I never knew how worried they were until I became the mother of a heart child myself. The level of faith, strength and courage they displayed is amazing to me. They allowed me to be a child and gave me an inner confidence that I was able to instill in my own child. They were probably much more afraid than they seemed, but they allowed me to live a normal life. I’ve thanked them for that.”

After Ayin’s birth, he was treated for Double Right Outlet Ventricle Tetralogy of Fallot complicated by a Left-sided Congenital Diaphragmatic Hernia, which affected his lung capacity. He had five surgeries for his heart and one for the hernia. Now 14, Ayin is an independent teen with a healthy sense of who he is. Karen said she’s tried to always be matter-of-fact about his CHD and has taught him about open communication, which her own mom, a nurse, taught her.

“He knows that I can relate, and I get it,” she said. “We’re both very independent, and we’ve had to be so in tune with our bodies. We speak with authority and freedom of expression about how we’re feeling and what we need.”

Karen said it’s important to talk with your cardiologist about what’s normal for your child and to remember that every child is unique. Recognizing your child’s normal is a critical part of being a good advocate for their care. She advises parents to “expect the unexpected” and to care for their own emotional needs as they focus on their kids.

“We as parents are so focused on our child that we need to be linked in with a place that can be an outlet for our emotions,” Karen said. “We represent strength to our kids, but there can be so much fear involved in caring for them. We need people we can say anything to. A good support system is integral to keeping one grounded, sane and encouraged throughout the roller coaster ride of raising a heart warrior.”

Ayin is a gamer who is a member of the Student Council and the school Sci Fi Club. He ensures that everyone in his sphere is treated fairly and respectfully, Karen said. For her part, she carries on the lessons of her own parents with Ayin.

“We acknowledge that there are no limits to what he can do,” Karen said. “Instead, we learned to take a different route to execute life skills. And we always celebrate every victory, no matter how small. We take every day as it comes and find things to be grateful for. You just never know.”

Ayin’s cardiologist, Dr. Neill Videlefsky, provided this comment about Ayin: “It has been an absolute pleasure and privilege to be part of Ayin’s care team since his very first prenatal visit at around 20 weeks gestational age. His resilience, positive outlook and kindness are an inspiration to us all.  These wonderful qualities will no doubt set him up for a successful and fulfilling future.”

For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.