Phoenix Children's Hospital is the only pediatric heart transplant program in the Valley. Pediatric heart transplants are among the most complicated procedures and patients require a lifetime of care. A heart transplant is recommended for patients with severe heart dysfunction that cannot be managed or treated with medication or other surgeries, as was the case with Max's HLHS heart in light of his tricuspid valve regurgitation.
According to PCH's website, the biggest and most obvious benefit of a successful heart transplant is that it will prolong Max's survival. After a successful heart transplantation, Max requires medications (a LOT of medications) and careful follow-up, but he should have normal or near-normal quality of life. At this point, it's impossible to predict how long he'll live wince surgical techniques, medications, and other medical care continue to improve. Heart transplants using modern immunosuppression were first done in the early 1980s and there are many children who were transplanted 20 years ago who remain healthy. Like with everything else, it's a wait-and-see situation.
Max was put on a heart/lung bypass machine and his old heart was removed before the donor heart was connected to his body. During the operation, Max received blood and blood product transfusions, antibiotics, and other medications. He had been intubated at birth and a ventilator helped him breathe via that breathing tube. Catheters and drains were placed in his body to drain blood and body fluids, monitor intracardiac pressures, and administer medications.
Max spent several weeks in the CVICU and is now, thankfully, at home with us. When he was released to us from the hospital, he was on 15 different daily medications. He won't have to stay on all of those forever, but he will have to stay on his anti-rejection/immune suppressors for life.
Max will also be unable to receive any live vaccines such as the MMR because they could cause his body to ultimately reject his heart. In theory, if everyone who is able to be vaccinated did so, herd immunity would help to protect him. However, because so many people have unfortunately jumped on the erroneous and medically unsupported anti-vaccine bandwagon, we as a modern society are experiencing occurrences such as a measles outbreak in New York and a pertussis (whooping cough) resurgence in Colorado. This is concerning to us for when Max is old enough to go to school but unfortunately, we can't force anyone to vaccinate their children and it's a bridge we'll have to cross when we get there.
In addition to daily medications, Max will also have to follow certain lifestyle rules to help limit his exposure to certain viruses. For example, when he is older, Max will be unable to eat from a buffet at a restaurant or visit somewhere like a build your own yogurt place, essentially because other people are gross. We'll also have to be very careful about the shelf life of and reheating leftovers at our house and Max will never be able to eat grapefruit because it might interfere with his medications.
One advantage of Max being so young when he received his transplant is that he won't know any differently. Jon and I are making the lifestyle changes for ourselves now so that when Max is old enough, he'll understand what is normal for our family and (hopefully) not feel like he's missing out on anything.
Most of this information was taken from Phoenix Children's Hospital's heart transplant info page. For more information, click here.