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Patient Returns to Sibley to Share a Big Heart with CHD Families

Former Sibley patient Matthew Gunther was diagnosed with Tetralogy of Fallot at birth, and he had four heart surgeries and three back surgeries in the years that followed. Now 31, he invests his time in supporting other kids and young adults with CHD and their families.

Matthew’s mother, Donna, was a founding parent of Kids at Heart when he was a child. Matthew still attends every family dinner, and he loves the opportunity to talk to new CHD families.

“It can be a really scary moment when kids get diagnosed,” Matthew said. “Families feel like they are entering a whole new world, and they can feel alone in it. But through Kids at Heart, I get the chance to talk to brand-new families and let them know there are tons of us out there. I’ve gotten to see kids grow up in the program and graduate from high school. I’m glad we have this program to connect us.”

Matthew also has volunteered since 2008 with Camp Braveheart, which he attended as a camper beginning at the age of 7 when it was still just a weekend camp. Some of his first campers have returned to camp as counselors.

I’ve met some of my longest lifetime friends through Camp Braveheart,” Matthew said. “Now as a volunteer I get to see the joy on their faces when they accomplish things, they may have thought they couldn’t do. Everybody has been down a similar path.”

Matthew also invests his time with two adult CHD associations. He has attended the conferences of the nationwide Adult Congenital Heart Association and advocated in Washington, D.C., for CHD patients for the past two years. Members of Georgia Adult Congenital Hearts have joined Matthew in supporting Kids at Heart programs, including the Cardiac Teen Retreat and the Parenting Your Heart Child Conference. Matthew talks to parents about what they have to look forward to and how he personally has coped with CHD. When he speaks to teens, he stresses the importance of staying in care and taking control of their health when they become adults.

“Some older teens will say they don’t want their heart condition to define them,” Matthew said. “I tell them, it doesn’t define you, but it is a part of you. You don’t have to share it with the world, but you should know there is a group of people who will support you and answer any questions you have. We get it in a way that friends who don’t have health issues don’t.”

Matthew draws his closest friends from others who have dealt with CHD. They are fiercely loyal to each other and believe in showing up.

“If one of us is having surgery, the rest of us will drop everything to be there in the hospital waiting room because we know how important that’s been for our families when we’ve been the one in surgery,” Matthew said. “We’ve crashed at someone’s house, so we can get up early and all go together to be there for a friend. And if we get the most dreadful call of all, we’ll be hand in hand at the funeral, supporting each other.”

Learn more about Kids at Heart and see a full calendar of events at www.choa.org/kidsatheart.

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

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