A few weeks after we had time to digest the news my son would need a liver transplant due to Alagille syndrome (ALGS), we started to explore all options. The xanthomas were spreading rapidly on his body and appearing on his face and genitals. He wasn’t sleeping at night due to the itching. What really drove home to me the need for a new liver was the night he woke up and was frantically itching his body. I could tell he was uncomfortable, so I went to lay with him and upon settling beside him, I noticed tears streaming down his face.
He was silently crying about the pain he was in. My heart broke into a million pieces.
At this point, I started to worry about how long he’d have to wait for a transplant offer. We consulted with his team about a living donor, and they said he was eligible. We knew I was young, healthy, and best of all his mother with the same blood type so I submitted myself to be his living donor.
During the process, I was nervous. First, I was scared to go through such intense surgery. I was worried about the pain afterward and the fact I wouldn’t be able to see my son for a few days after our surgeries. Beyond that, I was worried about my family because I’m a stay-at-home mom of 4 kids. I had a 9-month-old baby at home and I am the primary caretaker. My husband was more than willing to help, but he was running a new business and couldn’t just leave for long periods of time.
I was brought in for an education session. The session was intense. They wanted to make sure you were aware of the process from start to finish and all the not pretty things in between. After all, you were consenting to surgery where you were healthy and coming out needing to heal. Throughout the process, there was a lot of lab work! After the initial session, things moved quickly. The next steps were an electrocardiogram, echocardiogram, and interviews with social workers and the doctor who’d be reviewing my results.
Read more about ALGS therapies
During the interviews, there were so many questions. They needed to ensure I knew what I was doing. They asked questions about how I planned to care for my children, how we planned to care for my son, how I would feel waking up in pain and being restricted for months, and how I would feel if I went into liver failure because of the surgery.
After the first set of screenings, I went another day to go through my second set. I followed up with cardiology and of course, had more interviews with psychology and social work. In addition, I also met with the surgeon and signed a lot of paperwork consenting to the donation.
Soon after the completed screenings, we received a surgery date. We were very excited, but nervous. We needed to plan how we would take care of a child in the hospital and kids at home. Thankfully, our family stepped in and sat with us, and came up with some grand plans to make sure all areas were covered. We were ready, and even though I was nervous, I was ready to get this over with and get my son to another point in his life.
In the end, we ended up receiving a deceased organ offer exactly one month before our surgery date. We were thankful for that offer since he received a whole liver from a child of similar age and my husband and I were both able to be with him before and after surgery. While I didn’t end up being a living donor, the entire process brought so much awareness to me and how important it is for living donation. It is truly such an amazing, selfless gift and I hope one day I can help someone and change their life through living organ donation.