11/25/2025
"When I was pregnant with Hank, he was diagnosed with d-TGA, meaning his aorta and pulmonary artery were transposed. Then, when he was born, he was immediately intubated and had an atrial septostomy. At just 6 days old, he underwent open heart surgery - an arterial switch.
He was discharged at 17 days old, stable and recovering well from surgery. A little over a month later, during a follow-up echo, he was found to have pulmonary hypertension. He was admitted immediately, and he underwent an urgent cardiac cath to confirm the pulmonary hypertension and coil collateral vessels. Unfortunately, he failed extubation from that procedure and remained hospitalized for the next month as he received treatment for his newly diagnosed pulmonary hypertension. A few months later, he had another heart defect, an aortic coarctation, repaired in his second heart surgery.
For the next two and a half years, Hank’s PH continued to progress despite additional therapies. At that point, due to the poor prognosis for TGA kids who develop PH, his PH doctor at Joe D recommended we start finding an accredited comprehensive program for Hank’s care to be managed. We visited and spoke with a few different pulmonary hypertension centers across the country.
We knew the second we met the team at Cincinnati Children's Heart Institute that these were the people we would trust with Hank’s care moving forward. We lovingly call them “the Avengers” when explaining to friends and family how reassured we were in our decision to move across the country for them.
Hank has now been under the PH team’s care for a little over five months. In that time, he has started on subq remodulin and most recently, after the team’s relentless efforts and appeals, finally received insurance approval for Winrevair - the newest, most promising drug for fighting PH, which is still in clinical trials.
He’s also been enjoying becoming a Reds and Bengals fan, exploring all the local parks, sledding during his first ever snowfall, and completing his first ever baseball season.
Like many children born with CHD, Hank has been through a lot his first few years of life (2 heart surgeries, 8 cardiac catheterizations, a dozen hospitalizations). However, now our family has the comfort that he’s not battling this disease alone. We have, without hesitation, put all of our faith and trust in the PH team here and are endlessly grateful to have them by our side.
Hank especially looks forward to anytime he gets to come “take pictures of his corazón” and visit Dr. Miles or Dr. Critser 😊"
