Why might you need a transplant?
The most common reason for children to need a liver transplant (and this has been true for many years) is a disorder called biliary atresia.
This is a disease of infancy; it’s diagnosed in the first months of life. The children usually have a surgery that is called a portoenterostomy, or “Kasai”. Portoenterostomies don’t always help; the disease progresses in at least a third of children, so some of these children need transplants before they are two years old. Others do well for prolonged periods of time and need transplant later in childhood, but that’s the most common cause.
Other reasons include cirrhosis of the liver from any cause: genetic disorders, or inborn errors of metabolism, liver tumors that cannot be resected by surgery alone, and acute liver failure.
Maureen Jonas, MD, Medical Director, Liver Transplant Program
What are the different kinds of liver transplant available?
There are several different kinds of liver transplants. One is called a “whole organ transplant”, where there is a deceased donor and you take the entire liver and you put it into the child. You can have a deceased donor transplant called a “split liver,” where you actually divide the donor organ into two pieces and two recipients can benefit from that (sometimes it’s an older child and a baby, sometimes it’s an adult and a child), but that is still a deceased donor.
If those options are not available or take too long for whatever reason, we do have the option of what is called a “living donor,” where we take a piece of usually a family member’s liver and implant that in the child. Deceased donors are preferable to us because we don’t have to do an operation on a healthy person. Those operations are becoming relatively routine, but certainly not without risk for the donors. In addition, they take a family member away from the child when the child is sick and needs people around to take care of him or her. It is never our preference to do it, but we understand that in certain circumstances it is necessary.
Maureen Jonas, MD, Medical Director, Liver Transplant Program
How does the medical team decide to recommend a child for transplant?
Once again, it’s a multidisciplinary process. Once a referral is made to our program, there’s an evaluation that’s fairly standardized. It involves an evaluation of not just the organ, but the whole child: other things that may be medically complicating the situation, the child’s psychosocial situation, growth and nutrition, and so forth.
After the comprehensive evaluation, there’s an official selection committee meeting. The whole group of providers gets together. We have written policies about what constitute indications for transplant, and we abide by those, but we individualize when necessary. In some disorders, for example, it might be that the child’s liver is not totally failing yet but the quality of life is so bad, for example, with the liver there can be something called intractable pruritus (or itching), and it may be an indication to move to transplant before the liver itself actually starts to fail.
Maureen Jonas, MD, Medical Director, Liver Transplant Program