Mason’s Heart Surgery Experience: Overcoming Challenges on His Own Schedule
Deerfield Playhouse
The phrase “timing is everything” is one that every parent of a medically complex child knows too well. When it comes to medical decisions, timing is everything. But sometimes, it feels like you’re rushing to do everything while sitting around waiting.
At my 26-week growth scan, our ultrasound tech took an extra close look at Mason’s heart. A little later, she came back with my doctor, saying Mason’s heart seemed slightly enlarged. My doctor reassured me it was likely nothing, but sent us to Maternal Fetal Medicine just to be sure. A fetal echocardiogram the next week gave us the all-clear, and we moved forward, believing Mason’s heart was just fine. (it was not)
When Mason was born, his extra chromosome took us by surprise—though it wasn’t until 36 hours later that the neonatologist came in with the words, “I’m noticing some markers…” That moment shifted our world as we learned Mason likely had Down syndrome. Further testing confirmed it three weeks later.
Along with that, we also learned Mason had an Atrial Septal Defect (ASD). At first, we were told to just monitor it and that surgery wouldn’t be necessary for 3-5 years. But a few months later, Mason was also diagnosed with tracheobronchomalacia, a condition affecting his airway. Suddenly, his heart and lungs were both in the mix, and his pulmonologist suggested we might need to do surgery sooner to help relieve some pressure on his lungs.
Mason’s cardiologist, however, wasn’t on board. He didn’t think closing the ASD would make a difference for his lungs and wanted to stick to the original timeline. I usually trust doctors, but something about this didn’t feel right. After sharing my frustration with a trusted member of Mason’s care team, they strongly suggested I seek a second opinion outside of their hospital network to get Mason the best care.
We ended up at a Chicago hospital a few weeks later, where the cardiologist immediately saw the urgency. He said, “If you could push a button and make Mason better, you would. I don’t have a magical button, but we can do something that will help him feel a lot better. So why aren’t we?” And within three months, Mason was scheduled for surgery.
As it turns out, the timing was perfect. A new catheter device for ASD closure had just been approved in the U.S., and it was ideal for Mason’s age and size. Not only did this mean Mason could avoid open-heart surgery, but it also became an incredible educational opportunity for the entire surgical team. The creators of the device were actually present in the cath lab, teaching the other surgeons about its benefits. Mason made history as his surgeon’s first patient to use the new device—and only the second at the hospital.
The surgery was a success, and though the surgeon warned us we might not notice any immediate changes, boy, was he wrong! Two months post-op, Mason has gained four pounds, hit milestone after milestone, and is stronger than ever. And guess what? His lungs are in fact improving after the pressure was relieved from his heart! We also found out that his ASD was not in fact one abnormally shaped ASD, but instead was two smaller holes extremely close together, which we never could have seen from just an echocardiogram. Had we not done the surgery now, things could have ended very differently.
It took a little longer to get where we needed to be, but sometimes timing isn’t just important—it’s absolutely everything. And for Mason, it absolutely was. ~ Dana, Mason’s Mom
“We were shocked to see Mason at LMNOP just a few days after his heart surgery. You could immediately tell he had more energy and color to his face, it was an incredible transformation. Since then he is a little wiggler throughout the program, racing his friends across the playhouse floor. We’re so grateful for the advancement in technology making these challenging times easier on our participants and so proud of his strong family supporting him through this. Mason is inspiring future doctors and families that will be going through a procedure like this.“
~ Shannon, Deerfield’s Site Director
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