Sydney McFall   |   June 17, 2019

PVS Survivor: A Story of Hope


Episode I: Something Wrong

When Dylan Van Dyke was born, doctors told his mother something was wrong with his heart.

He was born with Pulmonary Vein Stenosis (PVS) a critical congenital heart disease where the heart veins thicken and narrow, blocking blood flow from the lungs back to the heart. In addition, Dylan was diagnosed with Pulmonary Hypertension (high blood pressure that impacts your heart and lungs) PDA or Patent Ductus Arteriosus (a large hole in the heart) and a bicuspid aortic valve (the aortic valve has two cusps instead of three). In short, Dylan had a major problem with blood flow.

“I felt like I was hit in the stomach. The cardiologist said to pray for a miracle.”

Episode II: Beating the Odds

His mother remembers being told PVS was fast progressing and that Dylan would likely not live past his first birthday. The statistics for a PVS survivor were slim. “I felt like I was hit in the stomach. The cardiologist said to pray for a miracle,” said Dawn Van Dyke, Dylan’s mother.

However, with medical interventions, medication and regular cardiology visits, his first birthday came and went. Then his second, third, fourth … ninth! The Van Dyke’s were beating the odds and treasuring every day together. Until, Dylan’s routine cardiology appointment where his mother brought up the shortness of breath she had been noticing in her son. After some tests, the cardiologist delivered the news no one was expecting – “Your son needs heart surgery.”

“The surgery lasted five hours. Those were the longest five hours of my life,”

Episode III: Surgery

A hole the size of a pinprick was the only entry for blood flow in Dylan’s heart due to his pulmonary vein stenosis. In other words, one side of the heart was getting too much blood flow and the other too little.

Two weeks later Dylan underwent open heart surgery. “The surgery lasted five hours. Those were the longest five hours of my life,” his mother remembers. The overwhelming scene she walked into after surgery is etched into her memory, “He was sleeping and still had the ventilator in place. He was pale and covered in tubes. His incision took up half of his chest.” Against the backdrop of hospital reality — emergency bedside surgeries and parents on their knees begging for a miracle, the Van Dyke’s held on to hope.

Episode IV: Skywalker Shows Support

Dylan recovered from surgery and went home on medication as a proud PVS survivor. He is now 15 years old and just finished his freshman year of high school. Dylan wants to be an architect or zookeeper someday. He is a straight A student that loves reading, art, Legos, video games, traveling and Star Wars. He recently won Project Heart’s May the Fourth be with You, Star Wars competition for Disney tickets. Mark Hamill even tweeted his support for Dylan.

Episode V: Cautious Optimism for PVS Survivor

Although Dylan is a thriving PVS survivor, his surgery did not cure him. In fact, there is no cure for congenital heart disease, yet. He will need more interventions, medications, surgeries, cardiology visits, the list goes on. His mother is “cautiously optimistic” when it comes to his PVS but feels more research needs to be done. She has a resounding message for those in the CHD community, “Never lose hope. Each day is a gift. Live each day like it is your last.”

Learn more about a cure for CHD and our part in it!

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