Once my son was diagnosed with Alagille syndrome (ALGS), we got the news his liver disease was severe and he would need to be placed on the transplant list. Although he was doing well in terms of lab work, he was experiencing symptoms from the liver disease caused by ALGS that were lowering his quality of life.
As a parent, watching your child suffer from medical conditions that you can’t control is an awful feeling. We tried to quickly complete his listing on the transplant list and then the real wait began. Being that my son blood type is O+, we thought the wait would be a little longer since he can only expect O blood type organs. As we watched and waited, 2 months into him being placed on the transplant list, I decided I couldn’t watch him suffer anymore. We weren’t sure how much longer it would be, so I decided to go ahead and start the testing process for being a living donor for him, as I am the same blood type.
I had to apply to be a living donor for my son. The hospital then contacted me and I had to fill out a lot of paperwork and information regarding my medical history. That process moved quickly and I was able to get scheduled for an information session at the hospital that you are required to attend when considering being a living organ donor. The session was about 2 hours long and consisted of me giving a lot of blood for lab work so they could thoroughly check that I was healthy enough to be a match for my son.
At the information session, everyone was there to be a living donor for an adult, and I was the only one there for a child. They were great about taking the extra time to explain the process for the donation to a child.
Read more about ALGS diagnosis
The information, although helpful, was scary. As a living donor, you need to hear the raw and real details so that you can be sure this is something you are willing to do. Those details were very real and very scary. Knowing that you were doing something for your child to be healthier was something any parent would do, but knowing you were a healthy individual undergoing a major surgery and going to wake up in a lot of pain and needing weeks to months of recovery time was something that was hard to swallow. In addition to all the details, I learned about all the testing that would be required to ensure I was a match. The testing scared me because I have a lot of medical anxiety from my son’s ALGS and was worried they would find something wrong with me and I would now need medical care.
Even though the thought of donating a piece of my liver to my son was scary, I was more afraid to not do it and see him suffer. I was afraid he’d have to wait for months for a new liver all while continuing to get worse.