Mom and Heart Warrior Daughter Reflect on Life with CHD

A few weeks before her daughter’s birth, second-time mom Allison learned that her baby would be born with a serious CHD called tricuspid atresia. This defect occurs when the valve that controls blood flow from the right atrium to the right ventricle does not form, so that blood can’t properly flow to the lungs for oxygen.

At a month old, Kendall received a BTT (Blaylock-Thomas-Taussig) shunt, followed by a Glenn procedure at 4 months old. She spent her second birthday and Mother’s Day that year at Children’s Healthcare of Atlanta Heart Center getting the final repair to her heart, the Fontan procedure. 

“The team at Sibley was very loving and supportive,” Allison said. “The social worker came by to check on us often. I always knew she was in good hands. When we had to spend her birthday in the hospital, they even had a little celebration for her. They tried to turn a special day that was happening during a not-so-fun time into a memorable occasion.”

Kendall, now 15, acknowledges that having a CHD can be “annoying” at times, but she said she refuses to let it hold her back. She’s a cheerleader and plays basketball, and she stresses the importance of communication with coaches and teachers. She says she wants to be a heart surgeon one day – and not just because she’s a fan of Grey’s Anatomy. She wants to help other kids with heart conditions like hers.

“It can be a struggle, but why would you let it stop you?” she said. “If you have a difficult time with a coach, communicate with them. They’re not mind-readers. It’s not an insecurity for me. I embrace it. When I was little and would go swimming, my mom told me my scars were kisses from Jesus and nothing to be ashamed of. If you didn’t have these scars, you wouldn’t be here. They just show how strong you are.”

Allison said it’s a relief to her as a mom that Kendall is old enough to advocate for herself now. She knows her own body and when she needs to take it easy and how far she can push herself.

“Families come to Sibley from all over the Southeast,” Allison said. “We just realize how blessed we are with this community in Atlanta. There are so many resources, and there are people who know what you’re going through and can offer so much support. I tell other parents to take advantage of everything that Sibley offers and to remember that you’re not alone.”

Kendall’s entire family appreciates the role Sibley has played in her life, including her older brother, Walker. When he turned 16, he was given a car by a family friend who insisted that instead of payment, Walker should donate the money he had saved for a car to a charitable organization. Unbeknownst to anyone, he chose to donate his savings to benefit cardiac patients in honor of his little sister. 

“I have a very strong faith, and you always wonder how you will get through something like this,” Allison said. “Between my faith and doctors and nurses who have taken such good care of my family, we all know, more than ever, that life is precious. When I look at my little 15-year-old and what a fighter she is, she is a walking billboard for that statement and how strong we can be.”

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