“I felt all the blood leave my body. It was an out of body experience. It felt like I was watching us through a window going through the same exact thing we did with our daughter,” says Ashley. “It was déjà vu.”
Three years earlier, the couple stood in the same emergency room when their 10-week-old daughter, Ruby, was diagnosed with the same condition. The rare heart disease, which is thought to be caused by a genetic predisposition or a viral infection, only affects about 4 in 100,000 infants under 12 months.
The Cotters had checked Buddy’s heart when he was born, and everything appeared normal. But when Buddy started experiencing symptoms similar to Ruby’s, “my husband just had this gut feeling, and that’s why we took him to the ER,” says Ashley.
The Cotters’ local hospital quickly transferred Buddy to NewYork-Presbyterian Morgan Stanley Children’s Hospital, where Ruby received her heart transplant in December 2019. “I called the heart failure team [at Morgan Stanley Children’s Hospital] and I was like, ‘My son has heart failure, we’re coming to you,’” recalls Ashley. “We had no question in our mind that we were going to NewYork-Presbyterian for care.”
Within 24 hours of arriving at NewYork-Presbyterian Morgan Stanley Children’s Hospital, Buddy went into cardiac arrest, and doctors swiftly put him on extracorporeal membrane oxygenation (ECMO), an external life support machine that uses a pump to circulate blood through an artificial lung back into the bloodstream, to stabilize his failing heart.
“It didn’t feel real,” says Ashley of the early days in the hospital with Buddy. But it was clear that Buddy was going down the same path as his sister, Ruby. “There really wasn’t a question anymore. We knew he needed a heart transplant.”
“He was very sick. He had an irregular heart rhythm and very bad ventricular function,” says Dr. Irene Lytrivi, a pediatric cardiologist in the Program for Pediatric Cardiomyopathy, Heart Failure, and Transplantation at NewYork-Presbyterian Morgan Stanley Children’s Hospital and Ruby and Buddy’s doctor. “[Brian and Ashley] were totally shellshocked. This is a young, healthy couple. Nothing would point to this sequence of events. But they’re amazing parents. And they showed that the first time and the second time around.”