If we have done our job well, of truly educating the parents, it should be a very difficult decision for them. If it’s a very quick decision, we probably haven’t done our job well enough. Lung transplant is a choice. I always tell parents, it doesn’t make you a good parent to choose transplant, and it doesn’t make you a bad parent not to choose transplant – it is an option, it is not a next step.

Dawn Freiberger, RN, MSN, Lung Transplant Program

 

I would consider parents part of the decision-making team. There are some patients who the transplant program may say, “Yes, this is a reasonable kid to proceed with transplant,” but after hearing all that it entails, the families may decide it’s not the right decision for their family and their child for a variety of reasons. They may feel their kid’s been through too much, they may think that their kid can’t handle it, or that it’s just not the right decision for whatever reason.

We try to make it clear to parents that it’s a big endeavor. In lung transplant, we describe it as sort of exchanging one disease for another. It’s not like you get your lung transplant and then you just go off and you never go back to the hospital again. You’re exchanging your pulmonary hypertension for “lung transplant disease,” meaning you have to come every three months for check-ups, you’re going to have bronchoscopies and blood tests, you’re going to take medicines for the rest of your life. If it was an easy, quick cure and you never had to do anything again, then of course people would sign up to do it right away!

Debra Boyer, MD, Associate Medical Director, Lung Transplant Program

 

For a liver patient, sometimes we do liver transplant for metabolic conditions. For those, the parents are very hesitant because the child’s liver is functioning well, they’re not in end-stage liver disease. However, because of whatever enzyme defect is missing, there is a fear that they might have neurological consequences in the future. That’s a very challenging decision, because the patient is healthy now, but you know that if you don’t do the liver transplant, the outcome is not as good compared to if you do a liver transplant. That takes more education back and forth, because we always stress the point, we’re replacing one problem for another problem.

Rima Fawaz, MD, Medical Director, Multivisceral Transplant Program

 

How do families choose transplant over dialysis?
Transplant is really the goal for all children because it helps them grow and develop much more normally, but it’s a family decision. Our big role is really educating them. As social workers, we help them think about transplant and make decisions about it, because unlike the other organs, this is not done in an emergency. You can stay on dialysis for 30 years. It’s not a good treatment for children for a really long time, but they could stay on dialysis for many, many years – unlike if your heart fails, or your liver fails or your lungs fail, that’s not an option.

People can move toward transplant very quickly who say, “I don’t even want to think about dialysis,” or people can decide that they need a course of dialysis, or, in a lot of cases, children have some kind of a disease that has to “burn out” for a while, so they may need to be on dialysis for a period of time.

Roberta Hoffman, MSW, Social Worker, Kidney Transplant Program