By: Stephany Ramos, Dylan’s mom
When our son Dylan was diagnosed with a congenital heart defect (CHD) at our 20-week anatomy scan, we were completely devastated. Fearful of what the future had in store, but also ready to begin the path of healing.
We actively sought care for Dylan in our hometown in Georgia. I went for a fetal MRI during which additional abnormalities were discovered. Dylan was diagnosed with total anomalous pulmonary venous return (TAPVR), heterotaxy, double outlet right ventricle (DORV) with subaortic ventricular septal defect (VSD), nutmeg lung, hiatal hernia, intestinal malrotation, and asplenia.
At this time, the local medical team decided they no longer felt comfortable operating on our son, as his likelihood of survival was very low. We were determined to give him the fighting chance he deserved, and our path led us to relocate over 450 miles away from our home to Cincinnati.
Dylan was delivered via c section here at Cincinnati Children’s Special Delivery Unit, and within minutes of being born, he went to the operating room just next door to receive his life saving open-heart surgery by David Morales, MD, and his team. During this first open-heart surgery, a BT shunt was placed in hopes this would hold him steady until he could undergo his biventricular repair (Bi V) once he reached 7kgs.
Dylan received his second open-heart surgery with a Bi V repair at 7 months old. This surgery took 13 hours and resulted in some kidney damage which prolonged his stay in the Cardiac Intensive Care Unit (CICU) while he was placed on dialysis for weeks until his kidneys started functioning on their own. Once he recovered from surgery, he did have another surgery to repair a diaphragmatic hernia and place his feeding tube (J tube).
Two life-saving, open-heart surgeries; a cardiac arrest on day two of life (given CPR for 12 mins); five trips to the cath lab for intervention; a CT scan; weekly echoes / EKGs; countless IV sticks and blood draws; arrhythmia medications; and multiple chest, breathing and feeding tube placements later—and we were finally on our path to going home.
At 10 months, we finally were given the clear to go home! We are currently back home in Georgia where Dylan is thriving and he has just celebrated his first year of life!
We are so very thankful for the doctors, nurses and staff at Cincinnati Children’s for advocating for our son—as well as the Ronald McDonald House Cincinnati and their staff for the amazing work they do to make families like ours feel at home.
Dr. Morales hopes that Dylan's story will provide not only hope for other families, but also more fetal heart success stories in the future.
"Dylan's story and his parents' bravery to relocate for months and undergo a strategy of a planned operation within minutes of birth for this rare lesion will provide hope for other families who are facing similar situations," said Dr. Morales.
(Published April 2024)
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