Make A Child Smile

Aiden's Story
written by mom Lisa

Aiden was born weighing 9lbs, healthy, and perfect. Shortly after his birth he began to turn yellow. He was turning jaundice. Then the doctors explained that Aiden had a different kind of jaundice, the kind seen when their liver is not working, usually due to disease. They explained all the possibilities, some were devastating. Especially a disease called Biliary Atresia.

After 6 weeks of grueling tests, bloodwork, office visits and two nuclear scans on his bile ducts, they said it was time to do a liver biopsy. I was so frightened. The results of the liver biopsy showed us what we all had been dreading. It was in fact Biliary Atresia. They performed a major surgery on our tiny 6-week-old infant. His insides were rerouted to help make bile flow so the toxic build up wouldn't damage his liver any further. The surgery failed. Aiden stayed in the hospital for the entire month of June and most of July. After coming home for 2 days he was readmitted. It was then I had to accept that this was the way our lives would be, and embrace the blessings that would come from it.

Aiden was so precious. His body was ravaged with illness and infection. We were finally told it was time to send him to a transplant center to discuss getting a liver transplant. I just didn't know what to expect. After an 8-hour trip to Atlanta, the surgeons were honest and grim; they told us that unless he had a liver transplant he would not live to see his first birthday. They put him on a national waiting list, and we began testing many people for living donor. We couldn't find any matches. In the meantime, Aiden was getting sicker, more yellow, and had developed a life threatening condition called Esophageal Varices. Aiden was shunting blood to his heart through tiny veins that couldn't hold the pressure. They would explode and he would vomit and stool blood. It became very serious one late night and he almost passed away from the blood loss. At that time the transplant team appealed Aiden's score and he was placed at the top of the waiting list, surely knowing he only had a few weeks if not days left to live.

On December 21st, 2002 Aiden received his Gift of Life! Our Christmas miracle. The surgery was 10 hours, and when he came out we were immediately told that he was having complications. Aiden's portal vein was clotted and they needed to get him back to surgery immediately. After another 10-hour surgery, they grafted a new vein on his liver, and rerouted his venous system. The weeks following transplant were horrifying. He had a massive amount of fluid build up from the two surgeries, and his body couldn't get rid of it fast enough. He began to swell. Aiden collapsed a lung, and developed an infection in his body that they couldn't locate. He began to have respiratory failure even while on a ventilator. Our family was so scared he wouldn't pull through.

Our tough little baby, who was only 8 months old at the time, fought his way back to us. After almost 3 weeks in the ICU Aiden was moved to the floor. That is when we noticed his numbers climbing and then we got word of another complication. CMV. CMV is a dangerous virus that if not treated can be deadly to the immune suppressed patient. They began the treatment immediately. During this 3 month time period, Aiden was so sick. He was getting IV medication and he was rejecting his new liver. (4 rejections in a row.) After many liver biopsies, months on IV steroids and antiviral medications, Aiden began to balance out. But still his numbers were looking terrible. After four months of not stepping foot in our home in Florida the team sent us home for Aiden's First Birthday. It was bittersweet, we knew that he had made it to the 1 year mark they said he wouldn't make it to, but we also knew he was so very sick still.

For 11 months, Aiden's liver numbers were elevated thousands above normal levels. We thought he would need to be re-transplanted. We prayed, and as mysteriously as his numbers rose, they began to fall. One year after transplant Aiden finally had normal numbers. We just couldn't believe it.. It had been 200 days in just 1 year we had spent in the hospital away from home. We had prayed that we would have a calm year and that we did. 2004 was like a dream. No hospital stays over night, he was joyful, precious and a happy child.

But a new problem began to develop. Aiden's immune system had been altered so much from his medication that he began to show a strange form of allergies. His T-cells were out of control, his immune system was attacking his own intestines and then worse, he became anaphylactic to many things. It just seemed that Aiden was having this complication to everything. Yellow lolly pops, at the circus, and then even in his sleep. He was now testing allergic to over 50 foods, and he was covered in hives every day! After months, and many close calls, we finally found someone who could give us a reason. Aiden was diagnosed with a very rare disorder called Idiopathic Anaphylaxis. He is about 1 of 17 kids diagnosed in the US with this disorder. Aiden can go into anaphylaxis from anything. He doesn't have to be allergic technically to it; his body just attacks anything it feels is a danger to him, even if it means when he is sleeping.

The transplant team knew the situation was dire so they attempted to take him off of his immunosuppressant drugs to see if that would help bring his immune system back into neutral. It did help, but he had a massive rejection where they almost lost the organ, so he was forced to be back on the medications once again.

The past few years we have been having to deal with the balance of his medications. Too little and he will reject, too much and it seems his kidney's aren't tolerating it. The drugs have cause hypertension and now some scaring in his kidneys. You wouldn't really know it though, other than his need for extra fluids and having to take breaks in the heat from heat exhaustion.

Aiden is THE most amazing child I have ever known. He has the most loving heart. He can sit and play his trains for hours using his wild imagination. He cares so deeply for others, and loves his baby brother so much. There are so many things he can't do because of his allergies and his immune system. He can't go to school but he did just join T ball for the first time. We are always nervous about his exposures, but we have learned that he has to have as much of a life as he can. After all, every day is a precious gift.

I couldn't be prouder of my son. In his small time here on Earth he has taught me more about grace and faith than I have ever thought possible. He inspires people all the time with his silly sense of humor and his resiliency. Thank you so much for reading about Aiden. I hope his story has touched you like it touches his family and me. God bless.