Entering the World of the Unknown, CHD Mom Advises Parents to Ask the Questions, Get Support

Looking forward to a smooth home stretch to her pregnancy, Lindsey went in for her normal 36-week ultrasound, but the results were not what she and husband Steven expected. Their son was diagnosed with Double Inlet Left Ventricle (DILV), a very rare CHD in which there is only one working pumping chamber in the heart. He was also diagnosed with and Transposition of the Great Arteries (TGA) and Coarctation of the Aorta. Lindsey was induced two weeks later, which meant there was little time to adjust to Aiden’s CHD.   

At four days old, Aiden had his first heart surgery, the Norwood procedure, at Children’s Healthcare of Atlanta Heart Center and was in the hospital for 17 days. Not long after, he returned to the Heart Center with heart failure. Too young for the Glenn procedure, doctors treated him with medicine, in hopes to avoid the need for a heart transplant.

His heart was able to recover, and he was able to have the Glenn procedure when it was time. In June 2020, he had his final surgery to correct his CHD at age 7.

“Before his third surgery, he wasn’t doing too badly. His pulse ox was low, and he got tired easily, but he was still in good spirits,” Lindsey said. “He feels a lot different after the surgery. He has a lot more energy, and he and his little brother play together on a soccer team.”

Lindsey said it was difficult when she first found out about Aiden’s CHD. She and Steven asked lots of questions about Aiden’s condition, including one that weighed on them heavily – what kind of quality of life could they expect for him?

“It’s scary because you don’t know anything about the world of heart defects, and Aiden’s is so rare, you don’t find many people with single ventricle like he has,” she said. “The doctors really helped us understand everything, and they’re so caring and personable. The night shift nurses would sit and talk with us, telling us good stories. They call and check on the kids, they make signs for their beds, put on special sheets and bring stuffed animals. They really treat their patients like their own kids.”

Lindsey said supportive groups like Sisters by Heart, a volunteer-led organization that helps families deal with a single ventricle diagnosis, provided comfort and hope when they began the CHD journey with Aiden. She is now able to offer an empathetic ear to other parents facing similar diagnoses. 

“When you first get the diagnosis, it seems unreal and one of the heaviest weights on your heart,” Lindsey said. “There are going to be many struggles and tears and uncertainty. But in the end, you truly see God’s grace and the miracles He can perform. In the end, you have one of the strongest kids out there—a Heart Warrior—and that is something amazing!”

For more information about Children’s Healthcare of Atlanta Cardiology and our pediatric cardiology specialists, click here.

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