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Heart Dad Takes His Baby Daughter’s CHD in Stride

When Jason’s wife, Kayla, was 22 weeks pregnant in 2018, a routine ultrasound revealed something they never expected. McKinley, their fifth child and the only girl in the family, would be born with severe congenital heart disease.

McKinley’s heart disease consisted of a double inlet left ventricle (DILV), a congenital heart defect in which a child has only one working ventricle, or pumping chamber, instead of two. McKinley also had pulmonary stenosis, Atrial Septal Defect (ASD) and Transposition of the Great Arteries (TGA).

McKinley was in the hospital for several weeks, on oxygen and a feeding tube, as everyone worked hard to get her big and strong enough for open heart surgery. She had the surgery at 6 months old and will have another, but doctors don’t know when. McKinley’s pediatric cardiologist is Sibley’s Wesley Lindsey, MD, in Gainesville, and Jason said he values the expertise and accessibility of Dr. Lindsey and his staff.

Dr. Lindsey is the smartest man I know,” Jason said. “There are so many different things going on with her heart, and the heart itself is very complicated. The people at Sibley are there when you need them, and they really make you feel better about what you’re facing.”

Jason says when you have a child with CHD, it’s important to get connected to other heart families, which he and Kayla have done through Kids at Heart. They have participated in the Greater Atlanta CHD Walk, which brings awareness to the issue of congenital heart defects and connects families.

“Before we had McKinley, we didn’t know much about CHD,” Jason said. “It’s like a different world. When you get connected with other families in similar situations, it helps to know you’re not the only ones.”

On Father’s Day this year, Kayla is quick to point out how important her husband is to his family as they navigate their heart journey together.

“What Jason won’t tell you is all the time he has spent being both dad AND mom to our four boys,” Kayla said. “While I’ve spent months at a time at the hospital with McKinley, he takes it all on at home by himself, while working full time, and he does it with grace.

Our family’s heart journey has been full of ups and downs, tears and laughter, and joy and sorrow. Jason has taken it all in stride with a faith in Jesus that is unwavering. When things start to feel overwhelming, he helps keep me grounded. He loves McKinley fiercely and, in her eyes, he hung the moon!”

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

 

 

 

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