Why might you need a transplant?
There are two primary reasons. One is if they have something called cardiomyopathy when the heart muscle doesn’t work well, and we need to replace it with a new heart that has a normal muscle that works well. The second most common reason is when their heart does not have the normal four chambers. Some patients have had one or two surgeries, some have had no surgeries, but ultimately the surgical path has ended for them, where there’s no more surgical options and they need a new heart with the normal four chambers.
There’s actually a third reason why and that’s when a patient needs a second heart transplant if their first heart has failed, whether it’s because of prolonged rejection or coronary artery disease. That’s very rare. We’ve done less than a dozen second heart transplants in our program.

Heather Bastardi, MSN, RN, PNP, Transplant Coordinator, Heart Transplant Program

 

How do families react to the idea of transplant?
I think most kids don’t get referred to us unless their cardiologist thinks they might die in the next two years, and so I think that realization of actually how sick they are is always the first piece. Families think, “Well, no, we’re just coming for information! Nobody really thinks we’re ready.” So at first there is a realization of the extent of their heart failure. About half of our kids have been sick for a long time, and do not have a sense of the declining nature of their hearts. The other half were relatively healthy and got sick quickly, which is a different process for the families all together. And nobody really wants to see us initially because nobody would want to have a heart transplant, but I think after the first or second meeting, just giving them information and getting educated is such a big burden off the families, to know that there is an option and they can learn about it and be comfortable with it.

Elizabeth Blume, MD, Medical Director, Heart Transplant Program

 

It depends. There are some families that we meet who have never seen a cardiologist before until an admission with a very sick child. There are others that have been told about transplant before their baby’s even born and we see them when they’re 14 years old and they’ve been waiting for this moment for years. I find there’s always a pretty deep sigh when they meet us, because it’s a pretty overwhelming thing to talk about. But on a different note, this means that there is another option for them. Some families have come from other institutions where they’ve been told there’s no option, so some families see transplant actually as a bit of hope.

Heather Bastardi, MSN, RN, PNP, Transplant Coordinator, Heart Transplant Program