Even before he was born, Dylan’s parents learned their unborn child had hypoplastic left heart syndrome (HLHS), a congenital heart defect that affects the heart and large blood vessels, causing the heart not to develop like it should during the first eight weeks of a mother’s pregnancy.
“We are from the Atlanta area but were living in Savannah, Ga., attending school at the time,” says Kenneth Nettles, Dylan’s dad. “But when we were referred back to Children’s to see specialists there, we decided to move back home.”
At just 1 week old, Dylan began seeing the pediatric heart team at Children’s, and when he was about 9 months old he underwent his first open heart surgery, having a Glenn procedure performed. The surgery helps redirect blood flow to the lungs.
Dylan was only in the hospital for about five days. After that, he was required to take medicine daily and would have check-ups with his pediatrician and the cardiologists at Children’s, but he went for years without any complications.
“I used to tell people, ‘You wouldn’t be able to tell Dylan even had a heart condition unless you saw his scar,’” says Kenneth.
However, everything changed for then 5-year-old Dylan and his family on Jan. 14, 2019, when they learned he was diagnosed with heart failure and would need a heart transplant.
“Doctors said Dylan was like a ticking time bomb,” Kenneth recalls. “He looked so well on the outside, but his heart was so sick.”
Dylan was immediately admitted into Children’s because his oxygen levels were so low and needed to be continuously monitored in the Cardiac Acute Care Unit. That was also the beginning of his yearlong stay in the hospital.
“We were already comfortable with the staff from previous stays, and soon thereafter Dylan became the Mayor of the Cardiac Acute Care Unit,” Kenneth says. “It was comforting and a relief to know there was a staff in place that could take care of Dylan medically, but also allow him to do everything a kid his age wanted to do.”
Almost one year later, Dylan and his family got the good news they had been anxiously awaiting.
“His surgeon came into the room at 7:34 a.m. on Jan. 8 and said, ‘I wanted to let you know that we found a match for Dylan this morning.’ Once I took it in, I just started calling family, and 12 hours later they took him back and it was official.”
The 13-hour heart transplant was performed by Fawwaz Shaw, MD, a Pediatric Cardiothoracic Surgeon and Surgical Director of the Heart Transplant Program at Children’s.
Chad Mao, MD, a Pediatric Cardiologist and Medical Director of the Heart Transplant Program at Children’s, said a successful heart transplant like Dylan’s requires a large team of providers that includes cardiologists, surgeons, nurse practitioners, social workers, a psychologist, pharmacists, nutritionists and more, all specially trained to care for children during this type of procedure.
“Dylan’s heart transplant was more complicated than most heart transplants,” Dr. Mao explains. “Because of his complex anatomy, our surgeons had to reconstruct the normal connections to the heart, in addition to transplanting the donor heart. He was also quite sick going into the surgery.”
But Dylan has done remarkably well following his surgery, Dr. Mao says, which is a true testament to the team at Children’s, as well as his family.
“Our team is focused on the care of children like Dylan with heart failure and cardiomyopathies,” Dr. Mao adds. “With our multidisciplinary team, we can bring the latest innovations and technology to our patients whether that means medications and implantable cardiac devices or more involved therapies like ventricular assist devices and heart transplantation. The greatest strength of our team is that we are able to develop a relationship with our patients and their families along the entire spectrum of care.”
Dylan was able to leave the hospital on Jan. 23—374 days after he was first admitted for his failing heart—and follow-up care will include daily medicines and check-ups with the Children’s transplant team for the rest of his life.
“It’s been so amazing having Dylan home, though,” Kenneth concludes, “watching him run around, ride his bike and play with his little brother Carson.”