As Ethan started to walk, and then eventually to run, he never showed any outward signs that the heart beating in his tiny chest harbored a congenital abnormality.
“Developmentally, Ethan was on schedule,” said his mother, Cindy. “He was very active and always running around. We never would have known there was a problem if it wasn’t for his pediatrician.”
During a routine check-up, Ethan’s pediatrician detected a heart murmur. Cardiologists at Children’s Hospital of Pittsburgh of UPMC then diagnosed him with an atrial septal defect (ASD), which is a hole between the two top chambers of the heart.
After a successful and routine surgery to repair the hole, Ethan had two unexplained cardiac arrests. A subsequent emergency cardiac catheterization revealed that Ethan’s coronary arteries were extremely narrow and unable to sustain his heart.
“The doctors told us that our two-year-old had the coronary arties of a 95-year-old man, and they didn’t know why,” Cindy remembers. “The only hope for him would be a heart transplant.”
Ethan was then placed on ECMO (extracorporeal membrane oxygenation), a machine that did the work for his heart and lungs. Because ECMO is considered to be only a temporary measure, his doctors, led by cardiac surgeon Peter Wearden, MD, PhD, requested and received approval from the Food and Drug Administration (FDA) to place Ethan on the Berlin Heart.
The Berlin Heart is a pediatric heart assist device that has been used with success in Europe but is still considered experimental in the United States. Dr. Wearden and his team at Children’s are among a handful of physicians in the country who have undergone special training to implant the device in children as young as Ethan and must get FDA approval for each procedure.
“Ethan had two strokes which doctors feared would leave him blind and with other neurologic deficits,” his mom said. “He was on the Berlin Heart over a period of six weeks, and we never gave up hope.”
The hope was well-placed. Ethan started showing signs of improvement and Dr. Wearden ordered another cardiac catheterization.
“Following the catheterization, the doctors came out of the room and they were in tears.” Cindy said. “Ethan’s coronary arteries appeared to be completely normal and clear. He was weaned off the Berlin Heart the next day and was removed from the transplant list a few weeks later.”
Ethan developed compartment syndrome of his right leg, and required a few more surgeries to repair the leg before he returned home.
Today, Ethan is back to being a healthy and active toddler, and will soon start his second year of pre-school. He still returns regularly to Children’s Hospital for check ups, and just as doctors do not understand why his heart initially failed, they don’t understand why it completely healed itself.
But his mom knows. He is a true medical miracle.