The night we received the phone call for my son, Jackson, to receive his liver transplant due to Alagille syndrome (ALGS) was chaotic. There were so many emotions and thoughts both my husband and I were processing and dealing with. One thought I had from the moment I received the phone call was about his donor.
This phone call was the one that put Jackson first in line for a new liver. A few months before this, we had received another call that he was a backup for a liver if it didn’t work out for the person who was the primary candidate. Even though that call didn’t turn into Jackson receiving a new liver, I feel it prepared us for when it was his turn.
During that time, I thought a lot about the donor and the family that was going to be losing their loved one.
Once we arrived at the hospital, my thought was consumed by the surgery my son was about the undergo as well as with sadness for a family I had never met. I wasn’t able to get much detail about the donor per the laws set in place, but the one thing I knew was that the liver was coming from a 4-year-old child. My heart shattered when I found out that piece of information. As a mom, I could not even imagine myself in that situation—losing my 4-year-old and how much suffering and torture that would cause.
Read about treatment options for ALGS
In the same breath, I felt an indescribable love for someone I have never met as they provided my family with such a selfless gift. The fact that in their darkest days, the parents or guardians of this child thought about all the other people they would be able to help by donating their child’s organs. Even though they were being presented with death, they wanted to present others with life and spare other families from going through and experiencing what they were experiencing at present.
I have always wondered about donors and their families. A year went by with no contact from them, so on Jackson’s first liver anniversary, I decided to write them a letter. I shared with them my extreme gratefulness for their decision. I also shared with them about Jackson and his life before and after transplant. I shared all the things he couldn’t do before and the things he was able to do now do and the things he loved, all thanks to his new liver.
Unfortunately, time went by, and I didn’t receive a response. Part of me is sad that I didn’t hear back from the donor family, as I had always dreamed of meeting them and getting to know their precious angel who gave my son a new life.
Even though we haven’t heard back from the donor family for 2 years now, I still hold out hope that one day they will reach out and we will get to meet and live out the scenario I’ve played in my head. Even if that doesn’t happen, I think about them often. I can’t think about being grateful for Jackson and his life without being sad for them and feeling emotions of grief for what they live with every day. They will always be in my thoughts and part of our family.