By Mary Kay White
Our son Mickey has been coming to Boston Children’s Hospital his whole life. Actually, he’s been coming here even longer than that. He was diagnosed with a heart defect during an ultrasound taken the 20th week of my pregnancy. It was hard at first to tell what was wrong with his heart but the images showed there was a significant problem, so we began meeting with Boston Children’s doctors to establish a plan of action.
When Mickey was born it was confirmed that he had a congenital heart defect called a double outlet right ventricle with coarctation of the aorta as well as hypoplastic left heart syndrome and severe tricuspid valve disease.
Where a normal heart has four chambers, Mickey’s only has three. He was born without a left ventricle and a severely narrowed aorta, which is the main supplier of blood to the body; so many of his organs, including the lungs, weren’t getting the blood they needed to function properly. It was decided that his best chance at life would be a series of three surgeries to re-route the blood vessels from his heart to his lungs to make sure his body got all the oxygen it needed.
Mickey had his first open heart surgery at five days old, performed by Dr. Christopher Baird. Overall it was a success, but a week after heading home he was readmitted to Boston
Children’s with breathing problems. Three days later he went into cardiac arrest and was placed on a life support device called extracorporeal membrane oxygenation (or ECMO for short.) Mickey was taken off ECMO in three days, but it was clear that a new plan was needed—his medical team decided that his second surgery would need to happen much sooner than the four to six months we were originally expecting. Our son spent the next six weeks in the Cardiac Intensive Care Unit (CICU), growing and gaining the strength needed to survive surgery. But, as the days passed, it became clear that Mickey’s best chance for survival would be an eventual heart transplant.
Before Mickey could receive a new heart he needed to grow stronger, and to do that he needed surgery to improve blood flow to his lungs and tiny body. After a few months in the CICU he was ready for the second heart surgery of his young life. For 10 hours Dr. Baird and his team carefully reconstructed his right ventricle from the inside to repair a leaky tricuspid valve, the main cause of his cardiac arrest, and they preformed the second of his three scheduled surgeries.
The procedure was a success, but Mickey’s recovery was difficult. Where most babies his age were taking their first trip to the beach and having their first picnic, Mickey spent his first summer in the CICU battling a blood infection and struggling with collapses in his lungs and the once leaky valve became extremely tight within a few weeks. But because of all the stress his body had been through, returning to the operating room wasn’t an option. It was easily the longest summer of my life, but by August Mickey was well enough to be listed for a new heart.
He spent the next two months growing and getting stronger, and on Oct. 19 we got the call—a new heart was available for Mickey. We spent another 10 hours nervously pacing a waiting room while Dr. Baird and the pediatric heart transplant team expertly placed a new heart in Mickey’s small chest. Once again the skill of Dr. Baird and his team, and Mickey’s undeniable fighting spirit, proved to be a winning combination. Mickey survived the operation and immediately took to his new heart.
Our son may be on the road to recovery, but his medical journey is far from over. He’ll spend the rest of his life taking anti-rejection medication to keep his body from attacking the transplanted heart, and it was recently discovered that he has severely damaged vocal chords, likely related to his heart condition. Repairing the damage to his vocal chords will take time, but his team at Boston Children’s is hopeful that with the right treatment he’ll make a full recovery.
It’s been a long struggle to get where we are today. Since birth Mickey’s been operated on six times, had almost a dozen breathing tubes placed, conquered a serious blood infection, dealt with tears and collapses in his lungs and at one point was taking over 20 medications daily. The only small number in Mickey’s medical history is the time he’s spent at home. In the eight months he’s been alive, our son only has spent a total of seven days at home. The rest have been in the hospital. To say that Boston Children’s is like a second home to us is a huge understatement.
But through it all, our little baby has never once given up on life. His entire time on this earth has been daunting, but through it all he’s been nothing but courageous. I’ve seen fear creep into his eyes during his hardest moments, but never submission. There’s no denying that Mickey is a fighter, but he’s also so full of love. His smile is one of the warmest you’ll ever see, and his cuddles are the softest I know. It’s been a struggle, but we are grateful to the people at Boston Children’s who have given us the opportunity to understand that whatever Mickey may have lacked in heart at birth, he’s more than made up for in love.