Heart Transplant Gives Life to Boy Born With Underdeveloped Heart

Looking at his smile and watching him energetically play with his sister, Ella, you wouldn’t know Mikey has spent the majority of his life in the hospital. By the time he was 7 months old, he had already undergone multiple surgeries and a heart transplant.

“Early in my pregnancy, they found indications he was having some issues,” recalls Mikey’s mom Rachel Collins. We knew going in he would need heart repairs.”

Mikey had a congenital heart defect called tricuspid atresia, which is when the tricuspid valve does not develop so blood can't enter the right ventricle, causing the right ventricle to be underdeveloped. Ultimately, it prevents blood from getting to the lungs in a way it typically would.

Knowing his condition, Rachel delivered Mikey in Cleveland Clinic’s Special Delivery Unit, and he was immediately taken to the Pediatric Intensive Care Unit. One of the complications he developed as a result of his heart defect is necrotizing enterocolitis, a condition that inflames intestinal tissue, causing it to die. After numerous procedures to treat the disease, Mikey’s doctors began considering options other than surgery to care for his heart.

“Sometimes the heart isn't capable of sustaining life even after surgery. The heart muscle is too weak, and this was the case with Mikey,” says Gerard Boyle, MD, medical director of Pediatric Heart Failure and Transplant Services at Cleveland Clinic Children’s. 

Mikey’s care team included Dr. Boyle and Hani Najm, MD, a pediatric and congenital heart surgeon. They decided a heart transplant would be the best treatment option. While waiting on the transplant list, Mikey had to undergo another surgery to install a ventricular assist device to keep his current heart working. Three months later, Mikey and his family received great news.

“It was the day my hometown put on a spaghetti dinner fundraiser for Mikey. As we were driving home, I got the call. His new heart was available. I didn’t sleep a wink that night,” says Rachel. 

On the day of Mikey’s surgery, Rachel’s anxiety eased a little when she met another mom whose son, Evan Culp, was also getting a heart transplant. Rachel calls Evan Mikey’s heart twin.

“These doctors saved Mikey's life. Dr. Boyle and Dr. Najm are the kindest, most down-to-earth geniuses I've ever met in my life. I felt comfortable leaving Mikey in their care,” says Rachel.

After his transplant, Mikey went to Cleveland Clinic Children's Hospital for Rehabilitation for a few months to build up his strength. The soon-to-be 2 year old is now back home and learning new skills each day.

“It’s been so wonderful watching him progress. When he first came home, he couldn't do much. He couldn't sit up – you just had to carry him everywhere,” says Rachel. “Now, he’s sitting up and crawling all over the place. He’s even eating regular food.” 

Dr. Boyle says, “Mikey has done remarkably well. He’s progressing very nicely. He’s behind developmentally because he’s spent all but a few hours of his life in the hospital, but he’ll catch up.” 

Mikey is not expected to have any limitations once he regains his strength. Along with his family, the community and even complete strangers are celebrating each of “Marvelous Mikey’s” milestones through his journey Rachel shares on social media.

Rachel’s message for other families going through a similar situation is to remain positive, while Dr. Boyle is encouraged by all the innovations in heart transplant.

“It’s really hard, and when you're in the thick of it, it's easy to go to dark places and imagine the worst-case scenario. My advice would be to never lose hope, have faith and know our babies are stronger than you can possibly imagine,” says Rachel.

Dr. Boyle adds, “I have been a heart transplant doctor for almost 30 years, and the success rate has increased exponentially. New technology has changed things dramatically. The last 10 years of my professional life have been so rewarding. We’ve been able to save so many more babies and kids and get them to transplant.”