A little over 7 months ago, our 15-month-old son received a liver transplant. Preparations for surgery started at Noon on Saturday. His surgery started at 6 AM on Sunday. He was loaded into one of those cute little red wagons, padded with lots of blankets, and we followed him, his nurses, his IV pole, and tower of IV pumps out of the room and down the hall. We all scrunched into an elevator and road down to the operating floor. We cuddled around him, kissing his head and stroking his hair, while we waited for anesthesia to arrive. We laughed with the nurses and joked with him as he got loopy from the first dose of anesthesia. We posed for pictures together. We prayed over him. And then, we smiled and waved good-bye to him as he was wheeled out for an 8-12 hours surgery. Once he went through the doors, I turned to my husband and said “Well! I’m not going to go to sleep. Want to get some coffee?”
I should back up some. Matthew was listed for transplant when he was just 2 months old. He was born with a urea cycle disorder, a genetic condition that prevents his body from breaking down proteins and deposits ammonia on his brain. It was miraculous that he survived his first 48 hours. It was miraculous that he left the hospital 34 days later. If he was going to have a chance of surviving infancy he needed a liver transplant. And so, when asked if we wanted to consider listing him, we didn’t hesitate.
The national organ recipient list works like this. Status 1A: You needed your organ yesterday. Status 1B: You need your organ ASAP. And then, there are numbers assigned to you. The higher the number the more critical you are for receiving your organ. When one becomes available, they start with matches at the top and make their way down until they find an available recipient. Status 1B people simply don’t wait for organs. They move on and off that list pretty quickly.
Except for us.
It is almost unheard of for status 1B patients to be relisted. Matthew was relisted 3 times (as were several other 1B children). Matthew was on the waiting list for almost 6 months before he received his first offer. After prepping him, they found a problem with the donor organ and called off the surgery. More than six months later we got our second, and third, and fourth call, all in the same month. With each one, we went further and further into the process before the surgery was cancelled. Matthew had gone so far as to be sedated and taken back for full anesthesia and PICC line placement before doctors realized that the organ wouldn’t be a good fit for him.
For a year, we were on edge, jumping every time our phones rang, wondering if it would be Matthew’s turn. For a year we wrestled with the reality of organ donation. It meant that for Matthew to live, someone else needed to lose their child. It isn’t easy to think about that side of things. Honestly, it is quite emotional. Throughout our wait, we would be talking with a friend or were out for a run or any random time, really, when the transplant would flit across our minds and we would break down into tears. Tears for the family that has to lose their child. Tears at the realization that if he doesn’t get his transplant soon, that painful loss could well be ours. And tears for the struggle to reconcile the selfishness of wanting our son to live, even at the cost of another life.
Matthew being carried into surgery for the last time.
You know that your child is only so big and that their body can only hold a small organ. This tiny bit of knowledge allows you to extrapolate about the donor and their family. “They are offering a partial liver, so the child must be about the size of our oldest daughter.” “The organ is not being split, so it is from a toddler.” Matthew’s liver fit perfectly. It was almost exactly the same size as his. I still can’t think about that without crying. I probably never will. Someone lost their one year old child on August 24, 2014.
There is so much guilt, so much pain, and so much inexpressible thankfulness in the process of being on the receiving end of an organ donation.
We prayed long and hard during our journey. We knew that God had wanted
Matthew to live, that God had (or didn’t have) a perfect liver for Matthew. We knew that God had gifted those surgeons with the skills to replace Matthew’s broken liver with a working one. We never doubted that our decision to list him was the right one. We were able to watch him disappear behind the swinging doors of the surgery floor with smiles on our faces because we had faith that we had followed God’s direction to that point. Everything after was God working through that skilled team to bring about His will. We knew that there was a chance Matthew would not come back from that surgery. But, it was a leap of faith that we had to take.
We see Matthew’s scar every day. It is healing beautifully, but it is still there. It will always be there. And I’m grateful for that. Because as long as that scar is there, I can never forget that somewhere out there is a family mourning the loss of their child and I can never fail to be thankful to them for sacrificing in the face of their grief so that my son, and so many other children could have a second chance at a long, healthy life.