Ashley and Chris had two children already when their twins were born 10 years ago. Although the pregnancy was high risk from the beginning, as is typical with multiples, they received a big shock when the babies were three days old, and they learned they both had CHDs. Madison’s would resolve by her first birthday, but Michael was in congestive heart failure, and he was diagnosed with Tetralogy of Fallot.
“I shut down when I heard he was in heart failure and would need open heart surgery. I just went numb and quit listening,” Ashley said. “Luckily, my husband started writing questions and answers on a pad of paper. He cried on the way home, and I’d never seen him cry. It took two or three years to get over the guilt that I did something wrong, even though they told me from the beginning it wasn’t anything I did.”
In his first months of life, Michael required a heart catherization and needed emergency heart surgery to ensure his body received enough oxygen. In order to restore his oxygen levels to normal, he underwent a surgery to repair his heart condition at five months of age. He had another surgery to insert a new pulmonary valve at age six, and they expect one more surgery at some point in his future.
When the twins were six months old, Ashley got connected with Kids at Heart. She now helps other moms adjust to their children’s CHD diagnoses.
Once I got into that community, I realized I’m not alone,” Ashley said. “They have become like family. Sometimes words don’t help when you’re stressed and overwhelmed. I’m grateful for people who understand.”
Michael is 10 now and doing well. He loves his pediatric cardiologist, Dr. William Mahle, but tends to lean toward the quiet side during his clinic visits. Dr. Mahle encourages him to start taking steps to advocate for himself.
“Dr. Mahle told him at his last appointment, ‘When you come back, I want you to have some questions for me.’ When they get to a certain age, they have to transition overseeing their own care,” Ashley said. “I’d be lost without Dr. Mahle.”
Ashley said Michael’s heart condition is tougher on her oldest, Baileigh, because she’s old enough to remember a lot of what he went through. James rolls with it. His twin, Madison, doesn’t like to see him struggle.
When Michael was in the hospital when he was six, all the siblings FaceTimed him every day and didn’t leave his side when he came home. They made sure to give him anything he wanted.
Ashley said she and Chris learned early on to roll with the punches. “No two days are alike, no two hours are alike, and no two diagnoses are the same,” Ashley said. “Our children may have the same diagnosis, but they need different things. I tell people take it day by day, especially at the beginning, because it gets overwhelming. Before we had the twins, we focused a lot on finances. We didn’t take trips because maybe there was something else, we needed. Now we take the trip because tomorrow is not promised. It’s not promised for any of us, but especially when you have a kid with a complex heart condition. Take the trip and make the memories. The responsibilities will always be there tomorrow.”
Ashley recommends two books that were helpful to her as she navigated Michael’s heart journey.
For more information about Sibley Heart Center Cardiology and our pediatric cardiology specialists, click here.