Kasie and Brandon were overjoyed to learn they were expecting a precious baby boy. But at their 20-week anatomy scan, joy quickly turned to fear and uncertainty. Halfway through her pregnancy, Kasie and her husband sat in a quiet conference room as their doctor explained their son’s diagnosis: hypoplastic left heart syndrome. Noah only had half of his heart and without complex surgical interventions, he would not survive and even with those surgeries, survival rates for their baby boy were extremely low.
Nine Months in the ICU
Noah was born in July 2019. At the time, Dell Children’s Cardiac ICU had not yet opened, so the family relocated hours away from Central Texas to give him the best chance at life.
In his first three months, Noah had already endured three open-heart surgeries, spending nearly 30 hours on cardiopulmonary bypass. He required multiple chest tube placements, central lines, and repeated intubations, along with several code events where his tiny body had to be resuscitated.
For nine long months, his parents lived by his bedside in the intensive care unit—navigating exhaustion, fear, and the heavy financial strain of being far from home, all while clinging to hope that their son would survive.
The Journey Home and Continued Heartache
In March 2020, after nearly a year in the hospital, the family was finally able to bring Noah home—and with that, transferred his care to Dell Children’s, where the Cardiac ICU had just opened. Just one week later, the world around them would shut down due to COVID.
While finally being home was a blessing, life was far from easy. Noah was critically ill—vomiting ten or more times a day, dependent on nourishment from a feeding pump 24/7, and requiring over thirty doses of medications around the clock. The infancy stage can be a difficult adjustment for even healthy families. For the Mareks, life was centered on appointments, therapies, and the constant fear that any moment could bring a medical emergency. The family moved through life in survival mode hoping that their journey would become easier soon.
However by 2022, Kasie and Brandon faced devastating news: Noah was too sick to undergo his final stage of palliative surgery. His only chance at survival was a heart transplant.
A Gift of Life
That chance came on April 1st, 2023. After an 18-hour surgery at Dell Children’s, Noah emerged with a perfect four-chamber heart, his little fingers pink for the very first time—all thanks to his precious donor, their family’s courageous gift, and the extraordinary team at Dell Children’s.
This spring, the family celebrated Noah’s second “heart-iversary” by releasing butterflies in honor of his donor, a little girl whose life continues to shine through Noah. Today, he is a joyful, spunky six-year-old who fills each day with energy and laughter.
Life After Transplant
But transplant is not a cure. Noah requires daily anti-rejection medication, leaving him immunocompromised. He has endured multiple heart catheterizations and remains at risk for complications such as rejection and cancer. His care involves almost every specialty at Dell Children’s—from cardiology and nephrology to neurology, pulmonology, and oncology.
One of the most remarkable resources for families like Noah’s has been Dell’s Comprehensive Care Clinic. For Kasie and Brandon, it has been life-changing. With a dedicated primary physician and nurse available around the clock, and support coordinating Noah’s extensive team of specialists, the clinic provides peace of mind and hope for the best possible outcomes.
Gratitude for Every Day
Today, when Kasie and Brandon see Noah running, laughing, thriving and playing with his sisters Elodie and Izabela, they are filled with gratitude—for his donor family, for the expertise available at Dell Children’s, and for the generosity of donors who make this level of care possible.
Noah’s story is one of resilience, community, and love. And as the 2026 Dell Children’s Trust Ambassador, Noah will share his journey to inspire generosity and hope, reminding us all of the life-changing impact of compassionate care.