2019 Northern CA LIVEr Champion
Jayden was born 29 weeks prematurely and has undergone many surgeries that were minor. At nine months old, Jayden was diagnosed with Cerebral Palsy. On July 20th at the age of 7, I got a call from his Neurologist that his Liver numbers were off. The neurologist showed his results to a GI Doctor who at the time didn’t think much since they’ve seen worst. However, the neurologist who has cared for Jayden since birth wanted an ultrasound, a MRI, and a biopsy. All these tests in a matter of two weeks.
Due to Jayden’s medical history, our GI told me he would less likely be a liver transplant candidate. Come November 10, 2016, we had our first visit with a hepatologist from UCSF Mission Bay, and they started running their own tests trying to see the cause of all the tumors in his liver. Because Jayden wasn’t sick at the time, he wasn’t a top priority on the list. This went on for another year until January 27, 2018 when we received a letter from UCSF that Jayden was active on the liver transplant list. They told us to plan for six months to a year before we get the call. Surprisingly, we got the call on the evening of April 13, 2018, three weeks after his birthday, and needed to be there at midnight for Jayden to prepare for his surgery next morning at 8 AM.
Luckily for Jayden, his transplant came at the perfect time. His MRI on his old liver showed 12 tumors, but upon further testing, doctors found a total of 20 tumors that could’ve been cancerous. Jayden was indeed very lucky. During the tests, doctors discovered Jayden had DNMT3A caused by the portal valve that goes straight through the liver. His portal valve went behind his liver causing him to develop tumors due to the lack of blood flow. Thankfully, surgeons were able to properly hook the valves up.
After a successful surgery, Jayden spent 48 hours in ICU before being moved to transition care for another six days of physical therapy. During that time, Jayden was on 10 different anti-rejection medication to help settle his new liver. Luckily, everything went well, and Jayden came home on April 23, 2018.
As months goes by, Jayden is now 15 months post op! Jayden is now only taking Prograf and goes in for bloodwork every four weeks to make sure his new liver is functioning properly, and every six months, an ultrasound to make sure main blood vessels are working properly.
Post-transplant for Jayden has his good and bad days. Some time he would be the happiest kid, and other times, he doesn’t want to be bothered. Learning to live with a new liver comes with challenges such as diet restrictions and medications. As Jayden’s mother, I do the best I can to give my son the best life he can have. Thankfully, our family and friends are here to support Jayden’s journey.
For this year’s Liver Life Walk San Francisco, Jayden will take on as a new liver champion with the American Liver Foundation Northern CA to continue their efforts in inspiring, supporting, and educating others. For that, we salute to you as a true ALF Warrior…Family Strong Together.