It was a total shock to find out that Janie was sick. We thought that we had a perfectly healthy baby. Family had started to mention that her abdomen was bigger than it should be and that something was off. Although she never looked sick, she was very tiny and grew at a very slow pace. She was diagnosed at nine-months old. Although she was never sick in a hospital bed while waiting for her tranplant, she started to show signs that her liver was slowly shutting down. Our life was on hold while we waited for the call that would save her life. We received a call on Sept. 11, 2005 that they had a donor available. Once we got to Nebraska they told us that the liver was too big and that they would not do the transplant! It was hard not to give up hope while waiting. All we could do was wait and pray for someone’s generosity to reach out to us.
What was life like while you were waiting for your daughter’s transplant?
As a mother to Janie, I thought that once she was placed on the transplant list it would only be a few months. It was so hard to watch her get sicker each day and there was nothing that we could do about it, but wait. I had no idea that it would take so long and it would be so emotionally difficult to get through. Waiting was the worst! We never went out of town to visit family because they were too far away from the airport. Life was on hold for us! We had to rely on each other as a family and have faith that everything would work out the way it was supposed to. We all go through trials in life and come out stronger from them. This was Janie’s trial that had an effect on us all.
Describe what it was like when you got “The Call.”
We got our “first” call nine months after they put Janie on the transplant waiting list. We were scared, excited, nervous and happy. We had no idea that there was a possiblity that we would get all the way to the operating room doors and be turned away. We were angry and frustrated after being told that the liver was not a good fit for Janie’s little body. Coming back home was hard for us, but we knew that we had to remain optimistic for Janie. When we got the “real” call on January 31, 2006 we tried not to get too excited this time, knowing that we could possibly be turned away again! We were definitely scared! Scared to be turned away, scared for Janie to go into surgery, scared of the outcome of everything.
Describe your life AFTER transplant. What has regaining your health allowed you to do? Are you back to doing the activities you did before transplant? What has the impact been on your family?
Two weeks after Janie had her tranplant, with 25 staples across her stomach, she was jumping on the bed! I was afraid that she would break something loose! I had never seen that much energy come from her before. She was a whole new kid. We came back to Arizona just one month after her transplant, just in time for her second birthday. Janie thrived! Her health improved from the moment that she received the transplant. Although she has had some setbacks in the last six years, she is doing amazingly well! Without the donor family’s decision of saying YES to organ donation, I don’t know where we would be today, and for that, we will forever be indebted to them!