Clayden’s Story

Smiling Clayden recovers from his heart procedure

Our buddy Clayden is quite the ladies’ man! This little heartbreaker is also a heart warrior. Clayden was born with hypoplastic left heart syndrome, or HLHS, a severe congenital heart defect in which the left side of the heart is underdeveloped. He’s not quite one year old yet, and already has endured two major heart surgeries, the Norwood procedure and Glenn operation. He needs one more – the Fontan procedure – to complete the staged palliation of his tiny heart.

Clayden with members of the UH Rainbow Cardiac Neurodevelopment Initiative

After he was born, Clayden’s parents had to wait until he recovered from his first surgery before they could bring him home. They were excited to finally have him home, but also scared for their son to be away from the doctors and nurses at UH Rainbow.

Thankfully, they weren’t doing it alone! The Congenital Heart Collaborative at UH Rainbow offers a digital home monitoring program called Hearts at HOME for infants with significant heart disease. The program provides parents with an iPad preloaded with the Hearts at HOME app. From the app, parents can video chat with their baby’s nurse practitioner, and relay important medical information like weight and oxygen levels for the care team to review instantly.

Apart from his scar, Clayden is a typical, happy toddler! He is part of UH Rainbow’s Cardiac Neurodevelopment Initiative, a multidisciplinary team that works together to ensure a child born with heart disease is meeting their milestones. The team will monitor his health and well-being into and through adulthood.