COTA for Jayden's Journey

Our Story

When Jayden was born everything was normal and nothing out of the ordinary but it all changed when he turned about 2 months old when I mentioned to his pediatrician that his jaundice has not changed and it might have looked worse, in the beginning, we all thought it was breast milk jaundice and we tried to treat it with light therapy but to no avail. He had blood work done and hours later his pediatrician called and told us some bad news, that Jayden might have a rare disease called Biliary Atresia. He recommended us to the Children’s Hospital of Colorado to do further testing and that same week we were scheduled in. And like any other human being we looked up what this disease could be, articles after articles, posts after posts, we learned so much but still couldn’t comprehend what has happened.

For days to weeks, months, and now years we had shed so many tears wondering why, and what could we have done differently but there were little to no answers. When he was diagnosed that week we had to also schedule an appointment for a surgery called the Kasai procedure, where they surgically attach his small intestines to his liver to try to return bile flow back into the intestines. Never did I imagine having to give my baby over to strangers in hopes they could save him and after about 4-5 hours of waiting, wondering, hoping, and praying, his surgery was finally done. He did perfectly and now it was another waiting game to see if the procedure was successful or not but after 3 months of waiting we found out it was not. During those 3 months of waiting, Jayden wasn’t gaining weight and had actually lost a little bit which led to him needing an NG tube.

It was heartbreaking to have to see him go through so much and it wasn’t even the end of it for the little guy yet. He wasn’t getting better but he wasn’t getting worse and several months after he turned 1 was when he was placed on the transplant list. But yet there were still complications not with Jayden but our insurance since Colorado had lost their center of excellence our insurance wouldn’t allow us to stay here for transplant so we had to get him listed in California. One month rolled by and we actually got a call, we were all happy, excited, and nervous but after a whole day of traveling, we finally made it to the hospital in California. Jayden did enjoy his first airplane ride though. When we arrived it was pretty late and we were both exhausted and well several hours later we got some more bad news. Jayden had a cold and well there was no way they would operate since he would be on immunosuppressants which would make his cold worse and he wouldn’t be able to fight it off. So a few days later we left heartbroken and defeated once more. Two years come and go with no calls and finally, after years of fighting with our insurance, they are letting us do live donors, no more waiting, no more wondering when. Jayden is finally getting his new liver soon.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.