Stronger Hearts Foundation was born out of firsthand experience – not theory, not distance, but lived reality. When our son, Dawson, was diagnosed with Hypoplastic Left Heart Syndome (HLHS), we became one of the many families suddenly thrust into the world of emergencies,surgeries, and long hospital stays. This is his story:

In July 2024, during a routine 20-week anatomy scan, our world shifted. They had found something wrong with our baby’s heart. After further testing, the diagnosis came: Hypoplastic Left Heart Syndrome (HLHS). It felt like someone had knocked the wind out of us. We sat in stunned silence, absorbing words we never expected to hear – “open-heart surgery,” “life expectancy,” “staged procedures,” “palliative care.” And then we looked at each other and made a choice: we were going to fight. We immediately began coordinating care at Johns Hopkins Children’s Center, diving headfirst into research, second opinions, and endless consultations. We couldn’t change the diagnosis, but we could change how we faced it.

In early September, we were thrown a curveball. Due to an unexpected staffing shortage, Johns Hopkins informed us that they could not support the surgeries Dawson would need in his expected birth window. After many difficult conversations and our own research, we made the decision to transfer care to the Children’s Hospital of Philadelphia (CHOP) – one of the top-ranked pediatric cardiac centers in the nation. We were met with kindness and professionalism from day one. When we arrived at CHOP in early October for our intake, we were welcomed with warmth. The staff was already familiar with our case. They had done their homework. From the moment we walked in, we felt like Dawson was already in good hands.

In November, Dawson was born in the early hours of the morning. There was very little time for a typical newborn moment. Dawson was stabilized and quickly transported to the Pediatric Cardiac ICU. Just three days later, on November 25th, Dawson underwent his first open-heart surgery: the Norwood procedure. It lasted nearly 8 hours. His chest was left open for three days to allow swelling to go down – a common but terrifying step for babies undergoing this type of operation. He was sedated, paralyzed, and hooked up to more than a dozen IVs, lines, and monitors. We spent Thanksgiving that year beside his bedside, watching and waiting.

On Christmas Eve, we were told a discharge might be possible, but there were hurdles. Weight gain, feeding goals, and oxygen levels all had to be perfect. On Christmas morning, Dawson gained over 60 grams – clearing the final hurdle. That day, he went home for the first time. Christmas 2024 became a day we’d never forget. We returned home with our medically complex son, still feeding via NG tube, but stable. We coordinated care with both CHOP and local specialists at Hopkins almost daily, determined to keep Dawson on track for his next milestone: the Glenn procedure.

January and February were filled with cautious hope, but March brought the hardest stretch since Dawson’s birth. After catching a respiratory virus, his oxygen levels dropped drastically, and he was medevaced to CHOP. He needed CPAP/BiPAP support, 24/7 monitoring, and time to stabilize.

We returned home shaken but grateful. We thought we were past the worst of it – until just four days later, everything changed. Dawson began struggling to breathe. His color shifted, and we knew something was very wrong. It turned out to be rotavirus – but it didn’t behave like a typical stomach bug. It hit hard and fast, triggering metabolic acidosis and then respiratory failure. This was the scariest moment of our entire lives.

The ER team at our local hospital stabilized him just enough to call in the helicopter for another medevac to CHOP. He was nearly lost before he even got on the flight. He spent several days in the Cardiac ICU and was discharged a few days later, but the trauma of that moment still lingers. It’s the kind of thing no one prepares you for, but parents in this journey need to know it’s possible.

Later that month, after a virtual check-in with CHOP, he was again transported to Philadelphia. This time, his breathing pattern signaled something more complex: tracheal compression. Dawson’s second scheduled surgery, the Glenn procedure, was initially set for May 6th. But due to the escalating respiratory issues, he was admitted a week early.

While inpatient, Dawson underwent a sedated CT angiogram, a cardiac MRI, and a bronchoscopy under general anesthesia. The results confirmed what CHOP suspected: his enlarged ascending aorta was compressing his trachea, making breathing difficult.

On May 8th, Dawson underwent a major surgery that included the Glenn procedure, an aortopexy (to lift and secure the aorta away from the airway), and vascular reconstruction. The Glenn surgery, a cornerstone in HLHS care, rerouted Dawson’s superior vena cava directly to his pulmonary artery, allowing blood from the upper body to reach the lungs passively. The goal: to lessen the strain on his heart while improving oxygenation. He was successfully extubated days later and began weaning off sedation. Despite being surrounded by drains, pacing wires, and IVs, his vitals were strong. He was moved out of the CICU and into the step-down unit within two weeks.

As Dawson moved through the Fall, his care continued to evolve alongside his growth. In late September 2025, he underwent placement of a gastronomy tube (G-tube) to support his nutrition and hydration needs. While this marked another medical milestone, it also reflected meaningful progress. Dawson now eats the majority of his calories by mouth and is able to take approximately 25% of his daily fluid needs orally. Fluids and medications remain the primary reasons for ongoing G-tube use.

Outside of the hospital, Dawson has continued to thrive developmentally with the help of in-home physical therapy. He has learned how to roll, sit, crawl, and even high-kneel – skills that represent countless hours of work, patience, and resilience from both Dawson and his care team.

Perhaps most importantly, this season has allowed Dawson to simply be a kid. Over the Fall and Winter, he has been home, growing stronger, and making memories with his family. Moments that once felt uncertain, now deeply cherished.