Sibley Team Takes Care of the Caregivers When Treating CHD

When Mary Helen and Fisher learned about their son’s CHD prenatally, they were given a range of possibilities to consider including that his coarctation of the aorta could be minor all the way to the need for immediate open-heart surgery. But they wouldn’t know for sure until Will was born.

“The hardest thing was knowing, but not knowing,” Fisher said. “It was the most scared I’ve ever been.”

They met with cardiologists at Children’s Healthcare of Atlanta’s Heart Center and selected a surgeon, Paul Chai, MD, before Will’s birth. Everything was in place when he was born, and he had surgery to correct his CHD at four days old. With Mary Helen still recovering from a C-section and Covid-19 protocols, Fisher stayed alone with Will for the days leading up to surgery.

“Everyone at the Heart Center was accommodating and reassuring, and they were willing to answer all my questions,” Fisher said. “With Mary Helen still recuperating at the hospital and another young child at home, I felt so guilty for any time I had to leave Will’s side, but the nurses made me feel comfortable leaving him in their care. They cared about our well-being as much as Will’s and made sure we were staying healthy and up to the challenge. Taking care of us meant that we were able to take the best care of him. It was the best ‘bad’ experience we could’ve anticipated.”

Mary Helen said the nurses kept her informed about how Will was eating and sleeping and discussed his medications with her daily so she could feel a part of his care plan, even while she was stuck at a hospital across town.

“As soon as I was discharged, I went straight to the Heart Center to be with him,” Mary Helen said. The nurses were amazing, and I got to hold Will all day before his surgery. They have continued to follow up with us and sent a note just last week to say they were thinking of us.”

Mary Helen and Fisher agree that it was important to them to gather all the information they could about Will’s condition, and they advise other heart parents to not be afraid or embarrassed to ask all the questions.

“You’re making one of the biggest decisions of your life when you choose a surgeon for your child,” Fisher said. “You want to be sure you feel comfortable and confident about putting your child’s life in their hands. Once you’ve made an informed decision, it’s important to step back and trust your decision and the doctors you’ve chosen. It’s out of your hands then.”

After a “textbook” pregnancy and birth with their first child, Mary Helen said they realized when Will was born that they had taken their children’s health for granted.

“Now we know that every check-up that is normal is a gift,” she said. “We try to remember to be super grateful for every moment. He’s our little miracle baby.”

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