Natalie is a beautiful 4 year old that is about to begin pre-k. She loves to play dress-up, ride bikes, camp with her cousins, boss her little brothers around, eating at her favorite Mexican restaurant, and to sing really loud in the car. Natalie also has biliary atresia- a rare condition found in newborns where the bile ducts inside and outside the liver are either blocked or absent. At some point, the child will need a liver transplant.
Something seemed wrong by the first night she was home from the hospital as a newborn. She was not gaining weight, cried most of the time, the whites of her eyes turned completely yellow and her skin was extremely orange. After many test her first week of life, it was determined that she needed a liver biopsy. At 3 weeks of age, she had the biopsy, and at almost 4 weeks on Christmas Eve, she had a Kasai operation. This operation allows the bile to drain. It also buys the child more time in hopes that the child is bigger and healthy enough for transplant. For a while, her surgery was considered a success but soon after it was a rocky road for about 2 1/2 years. She had many hospital stays due to cholangitis, which is inflammation of the bile ducts.
Right around Natalie’s 3rd Birthday, things seemed pretty normal. She was able to have less doctor visits, labs less often and she even took less daily medications. Life became pretty “normal.”
After Natalie’s 4th birthday and a routine clinic appointment, some red flags appeared. It was noticed that she had heavy breathing and seemed extremely tired most of the time. Natalie’s doctors put in an order for an echo and called for additional labs. This confirmed that she developed hepatopulmonary syndrome – this affects the lungs of people with advanced liver disease. There is no cure, except liver transplant.
As we hoped and prayed to hear the word “transplant” years down the road, we realize the journey needs to begin now. Natalie is a pretty tough girl already, but we know she will be a tough HEALTHY girl after she receives this new gift of life.
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.