Our son Jonathan was only 8 and a half months old when he received his gift of life. Jonathans journey began on My 4th 2009. We (as well as his two big sisters, and big brother) were elated to meet the little guy who would complete our family. He was perfect! He was just a bit jaundiced but we (including his doctors) thought that it was breastfeeding jaundice and would go away on its own. It did not, and at 8 weeks old he was diagnosed with biliary atresia, a rare liver disease in which the body has no way to drain bile from the liver and the liver then is unable function. Left untreated most children do not live past their 1st birthday.
From that day on, life was a whirlwind, our 8 week old baby had a major abdominal surgery a couple days after the diagnosis to try to save his native liver. We were so hopeful. However it only held off the progression of liver disease for a couple of months. By September he was so sick. He stopped eating because his little belly was severely swollen with fluids from his failing liver. He required a feeding tube. We lived in the hospital with him where he endured countless procedures, medications, and medical interventions. He was so very brave and continued to be such a happy baby. He was placed on the waiting list in the late Fall and our wait began. He was moved up multiple times as his doctors found more and more issues and he got sicker. That was so hard to do, to watch our then, 7 month old, get sicker and sicker in order to get closer to a transplant that would save his life. We though of his future donor and their family often during that time. We were very aware that out there in this world there was a child and a family going about their lives unknowing that one day they would save our child through their loss. It broke our hearts. Of course there was always the chance that our son would NOT get a donor in time, but we refused to think that way. We hoped beyond hoping that someone out there would make a wonderful sacrifice despite great tragedy.
On January 24th we got the call. Our nurse informed us that it was a “size match.” It is difficult to explain the range of emotions we felt in learning that. We knew that at that exact moment in time there was a family somewhere close that was going through the heartbreak of losing their baby. Yet, we were elated at the same time that our sweet boy was going to get a chance to live.
We kissed our baby “goodbye” at 1am and by morning he had pulled through the surgery like the fighter he was. His gift of life was AMAZING!!!!! Within hours, his labs improved and he and his new liver began to work together as one. We found out days later that after examining his native liver, Jonathan was far closer to death that even his doctors realized. We literally could have lost him at any moment.
Over the past four years there have been many struggles and medical issues, but far more wonderful moments!!!!! Our little guys is not so little anymore! Jonathan is now a spirited, silly, 5 year old KINDERGARTENER. He LOVES to swim, run with his siblings, ride his bike, play outside, be silly, work puzzles and do all the things little boys like to do. To look at him, you would have no idea the early struggles he faced in life. It is because of our donor that we can kiss him goodnight every night and read him books about super heros. It is because our donor we can watch his little face light up when he learns something new and squeals “ see mommy/daddy, I’m learning!!!!” It is because of our donor we can look at all of our children and cherish what gifts they truly are and remember what is truly important in life. It is because of our donor that our family is whole.
It is not difficult to explain what organ donation means to us. It means EVERYTHING to us. It is such a gesture of love, hope and courage. It means a lifetime together with our son. It is our hope that one day EVERY PERSON that needs a life saving transplant will be able to get one. There are far too few organ donors and babies just like our Jonathan die EVERY DAY. Organ donation costs nothing, but means EVERYTHING to families just like ours. One of our favorite shirts that Jonathan wears states “the greatest hero I never met was the organ donor who saved my life.” Be a hero, be an organ donor!