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Once we found out my son was going to be listed for a liver transplant, our journey with Alagille syndrome (ALGS) changed. We were no longer left wondering whether he’d be one of the 20% of ALGS patients who would need a liver transplant. We knew the exact endpoint we were heading to, but we were left with a bunch of new fears and anxieties. We had a lot of questions, such as how long does the process take, how long would we be waiting for an organ donation offer, and would he become even sicker while waiting for an offer?

After having some time to digest the news, I started to do my own research. Right away I posted a question about transplants on the ALGS Awareness Facebook page, which is hosted by the Alagille Syndrome Alliance. I wanted to connect with families with children under 3 who have gone through the transplant process and understand as much detail about their story as I could. I asked questions like “how did your young child do during the surgery and tell me more about the recovery?”

I was more afraid of transplants because he was only 2 years old and seemed way too little to handle such a major surgery. Talking to other families and hearing the positive side of transplants really helped me not be so afraid.

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Along with doing my own research, we were scheduled to meet with the transplant team. The initial transplant education and evaluation were a lot to absorb. We started the day with an entire education on the transplant process, recovery, and post-transplant life. We met with a social worker and psychologist to discuss the situation and be evaluated. We even met with hospital billing so they could go over the transplant cost and our insurance coverage.

Read more about the diagnosis of ALGS

Once we met the transplant team and were introduced, they began to discuss our son’s case and state aloud one by one whether they agreed with listing him for transplant. Each team member agreed. We signed a lot of forms and were scheduled for a few additional tests that he would need before being able to be listed. 

I left the transplant evaluation feeling much better about the new journey we were on. I had a lot more information, including solid data on the transplant process. Although it was still scary, I left feeling calm and in full understanding of what was happening. The thing that made me feel the most confident was meeting the entire transplant team.  The surgeon was amazing, and I was very thankful she was able to make our meeting so I could meet and get to know who would be performing such a big, lifesaving surgery on my son.

I remember she pulled him onto her lap and held him as she talked to us just as if he was her own child.  At that point, I knew he was in amazing hands, and she would do whatever it took for him. The transplant nurse practitioners even helped with my 8-month-old baby that we brought to the appointment and took turns holding him throughout the meetings. 

They were really treating our family with respect and understanding and doing whatever they could to help ease any stress in our current situation. I’m so thankful this was the team that was assembled because I couldn’t have handpicked a better team myself if I tried. 

After talking to other ALGS families who have gone through transplants and completing our transplant evaluation, I felt hopeful about the future. Once we completed the transplant evaluation and had the remaining appointments and tests completed, my son was listed for transplant about a month later. At that point, the reality set in and we started the process of waiting for his gift of life.