Alex was born 3/26/19. We were aware he had a minor heart defect, and initially he seemed healthy. He was admitted to Children’s Hospital of WI a few days after birth for high bilirubin levels. He underwent an extensive work up, and after levels decreased a bit he was discharged with close monitoring and suspicion of liver disease.
Bilirubin started to rise again after a few weeks and he had a liver biopsy at 1 month old that confirmed the diagnosis of biliary atresia- a rare infant liver disease in which bile ducts are scarred over, causing bile to back up into the liver. This leads to liver failure. At 6 weeks old on 5/6/19 he had the Kasai Procedure, which attempt to reestablish bile flow.
Unfortunately, only 1/3 of Kasai procedures are successful, and BA is the leading cause of liver transplantation in infants and children.
Alex’s Kasai was unsuccessful and he was listed for liver transplant on 12/9/2019. He has spent much of his life in and out of the hospital with fevers, infections, and complications from ascites.
We are currently undergoing living donor evaluations to get this boy a new liver and prevent him from having to wait a long time on the waiting list.
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.
Is it possible to donate a partial liver? What type of blood is he?
Is it possible to donate a partial liver? What type of blood is he?
My son is almost three and I can’t imagine what your going thru. . .what blood type is he?
Alex is type A+.
Hang in there. My daughter was diagnosed with the same thing when she was 2 weeks old. She received a piece of liver from another child at 10 months old after being on the transplant list for 6 months. I totally understand what you’re going through. Think positive things will get better.
I know isnt much but I shared your story on my Facebook asking everyone to donate. My heart hurts for you and your family and I will keep your son in my prayers!!!
My son is almost three and I can’t imagine what your going thru. . .what blood type is he?
Alex is type A+.
Hang in there. My daughter was diagnosed with the same thing when she was 2 weeks old. She received a piece of liver from another child at 10 months old after being on the transplant list for 6 months. I totally understand what you’re going through. Think positive things will get better.
I know isnt much but I shared your story on my Facebook asking everyone to donate. My heart hurts for you and your family and I will keep your son in my prayers!!!