Living with a Congenital Heart Defect: One Family’s Journey

Kara King had what most would consider a normal pregnancy. She didn’t have any issues beyond the typical morning sickness and her ultrasounds showed no signs of any problems with the baby. It wasn’t until after her son was born she learned he had a congenital heart defect (CHD).

“Brayden was blue when he was born and the doctors told me he wasn’t doing very well. I’ll never forget when they told me that his ventricle was missing,” said Kara.

Brayden was diagnosed with pulmonary atresia and hypoplastic right ventricle, a form of heart disease in which the pulmonary valve and right ventricle do not form properly and no blood can go from the right ventricle of the heart to the lungs.

Kara was overwhelmed with the news, “I remember my family asking what was going on and I didn’t know how to explain it. I was just going through the motions.”

Brayden underwent a cardiac catheterization, which was followed up by several surgeries during the next couple of years.

At five days old, Brayden received a BT shunt. When he was 9 months old doctors performed the Glenn procedure, which was followed by the Fontan procedure at two years of age.

Growing up with CHD

Growing up with CHD can be difficult, especially when multiple surgeries and procedures are required.

Brayden, now 18 years old, says he didn’t feel any different than anyone else when he was younger, but that changed as he got older.

“I remember later in elementary school I had to stop playing organized sports, because it was getting more physical and I couldn’t keep up like I used to,” said Brayden. “That was rough, but I found other things to do.”

Brayden could still play ball in the backyard with his dad and younger brother, and he played a lot of video games, “I still had all my friends, so it wasn’t like I suddenly went from being one way to another. We just found other things to do together.”

Kara said Brayden found other ways to be competitive, “In high school, he joined the debate team and he was really good. You just play the cards you’re dealt. Instead of saying you can’t do this or do that, you figure out what you can do.”

Brayden was doing great until his sophomore year in high school.

“It was the first day of school and I had made an appointment for his routine cardiac checkup, but it was anything than routine,” said Kara. “The doctor told us he had a third degree heart block.”

Brayden was in-and-out of the hospital for the next several months and a couple days into his junior year he received a pacemaker.

“I missed a lot of school and it was difficult at times, but I really tried to focus on being positive,” said Brayden. “Sometimes I dwell on the fact I have CHD, but I try to think of other things. I really am so lucky.”

Camp Systole: From Camper to Counselor

One thing that helps Brayden get through the tough times is the friendships he developed through Camp Systole, a camp for children living with CHD. Children’s Mercy doctors and nurses volunteer their time to take care of the children’s medical needs and participate in activities. Campers build relationships with their care team while meeting other kids just like them.

“Until Camp Systole I had never met anyone that had a similar problem like me,” said Brayden. “It’s nice having friends that can relate better than other people.”

Brayden is now a counselor at the camp. This was his first year in the new role and it was an experience he’ll never forget, “I remember those days of being a camper and now I’m someone these kids can look up to.”

The camp also provides opportunities for parents to connect.

“We didn’t have Facebook groups or other resources readily available when Brayden was little, so it’s been nice speaking with other families and knowing I wasn’t alone,” said Kara.

Parents talk about everything from their child’s heartrate, to how much school they’ve missed for procedures, to simple tips to make life easier.

“I remember after one of Brayden’s heart surgeries he had all of these drains, so my mom took a sling my dad had and we used it as a pouch to hold the drains,” said Kara. “It’s that kind of stuff that parents come up with and we can share these great ideas with one another.”

Advice for Parents

Kara decided to become a nurse eight years ago because of Brayden’s heart issues and now works in the operating rooms at Children’s Mercy, “It never crossed my mind before to be a nurse, but I took care of Brayden and I knew I could take care of other kids.”

Looking back, Kara said she wishes she would’ve asked more questions early on and now encourages other parents to speak up.

“I was too scared to ask the doctors questions. I felt I was asking the same questions over and over,” Kara said. “It’s hard to comprehend what’s happening to your child and you’re just trying to get to the next day. It’s OK to ask your care team to explain it until you understand what’s going on.”

She suggests writing down questions so you don’t forget to ask, and ask doctors and nurses to explain things in a way you can understand. “As a young mom at the time, I didn’t know how the heart worked or the chambers worked,” Kara said. “I needed someone to show me. The more you know, the more you can do to help your child.”

Planning for the Future

It’s unknown if more surgeries are in Brayden’s future. He might need his mitral valve replaced someday.

“To look at him – he looks fine, he’s doing fine. It’s just wait and see,” said Kara.

For now, Brayden is focused on college. He’s a freshman at UMKC and studying pre-med, and considering becoming a pediatric cardiologist, “I really started thinking about what I wanted to do when my mom became a nurse and because this is my life already, it just made sense.”

Regardless of the career path Brayden chooses, he says it will definitely be in pediatrics because he can relate to young patients and provide a unique perspective to each family, “I can discuss the impact their diagnosis will have on their lives and better explain what is going on. My hope is that I can make it less difficult for everyone.”

CHD hasn’t slowed Brayden down and Kara has this message for other parents, “Being born with a cardiac condition doesn’t limit your child on what they can do or become. It doesn’t change who they are or the dreams they may have, they just have to take a different path to get there. I never thought in a million years Brayden would have made it into med school and he did it all on his own. I’m super proud of him.”

As far as the most important thing Brayden has learned, “focus on the positive. It’s easy to get caught up in the hard times, but then you’d be missing out on life. Whether you realize it or not, there is so much you have to make things great.”

Learn more about congenital heart defects, which includes parent resources for understanding a prenatal diagnosis, postnatal diagnosis and adjusting post-surgery.

Learn more about the Ward Family Heart Center at Children’s Mercy.

Learn more about Camp Systole.

Learn more about the Congenital Heart Defects Families support group.