Arlo Lewis, HLHS Heart Warrior

We discovered that Arlo had Hypoplastic Left Heart Syndrome after our 20-week ultrasound. After a brief breakdown, we took a deep breath and started fighting for our son.

Arlo was born at C.S. Mott Children’s Hospital in Ann Arbor, Michigan. Three days after his birth, he had his first open heart surgery, The Norwood, and stayed one day shy of three weeks. We knew his subsequent surgery would be only months away, and the interim period was risky for him, especially if he got sick, so we kept him home and safe. At five and a half months old, he had his second open heart surgery, the Hemi-Fontan, and stayed only six days in the hospital! After that surgery, he went from a very skinny baby to a slightly more rotund baby. At 2.5 years, he had his final heart surgery, the Fontan. He stayed a little over a week for that one.

He is now eight years old and doing remarkably well. He is aware and proud of his heart condition and the number of scars he has across his chest and abdomen from his battles bring him pride. Arlo is creative, intelligent, sweet, and feisty (we call him Baby Hulk). He likes Legos, crafts, baseball, karate, stuffies, and superheroes.

As of now, besides his scars, you cannot tell anything is amiss with his health when you meet him for the first time. He is not a fast runner, and his legs get tired and sore. He does not have the stamina at times as other kids. As he ages, his heart, kidneys, and liver will be under more stress due to how Fontan had to restructure his vascular system. As of now, there are not many other alternatives besides transplants once these organs fail.

Our fight continues! We wanted to be agents of change and support the doctors and research groups striving to find better solutions for single-ventricle patients like Arlo so they can live long and healthy lives.