Charlie was born with a variant of HLHS, a congenital heart defect where there is only one pumping chamber instead of two. Blood flow to the body is limited without medication after birth, and ultimately the defect requires a series of cardiac surgeries. Within the first week of the baby’s birth, the first of three heart surgeries are performed (unless other medical concerns delay surgery).
Through these surgeries, the single ventricle becomes the main pumping chamber to the body. The later surgeries direct non-oxygenated blood to the lungs, bypassing the heart. These surgeries are not able to cure the heart defect, but act to separate the deoxygenated and oxygenated blood and therefore, allow the single ventricle to function more efficiently.
At 6 days old, Charlie underwent the first surgery to 
repair his heart. After the surgery, he was moved to the PICU (Pediatric Intensive Care Unit), then spent time in the TCU (Transitional Care Unit) before being discharged to go home.
“At 2 weeks old we were able to take him home without oxygen, he was feeding well. It could not have gone better,” Jean says.
“It was a little scary taking him home for the first time. For those first two weeks in the hospital, we always knew what his numbers were, he was constantly monitored. Now, we didn’t have that constant monitoring,” she recalls. A home healthcare nurse visited a few times a week to check on him, which provided the family with reassurance that he was doing okay.
A Mother’s Intuition
When Charlie was 9 weeks old, he had a regularly scheduled appointment with the cardiology department at Cardinal Glennon.
“I’m not sure if it was mother’s intuition, but I had a weird feeling about that appointment,” Jean says.
When they arrived at the Dallas Heart Center, her fears were confirmed — Charlie’s oxygen levels were dangerously low. As soon as the team performed his echocardiogram and gathered his other vital statistics, he was admitted to the hospital and a cardiac catheterization was scheduled for the next morning. Charlie’s condition worsened, and the team determined they needed to perform Charlie’s second HLHS heart surgery, the Glenn Procedure, earlier than planned.
“It was scary, they needed to intubate him and were preparing him for ECMO. It was early in the evening and Dr. Huddleston stayed late that evening to perform the surgery that night, knowing it was the best thing for Charlie,” she recalls.
Charlie had a challenging recovery. Initially, he went home a few days after surgery, but he regressed and was re-admitted for two weeks. When he came home, he remained on oxygen for eight months. A cardiac catheterization procedure right before his first birthday helped wean him from the oxygen.
Charlie’s third surgery, the Fontan, was performed when he was 3 years old. It was a success, and he went home 10 days later.
