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We brought Maya in to her 2 month appointment on 8/25/20. Despite being a pretty colicky baby, she was doing great physically, gaining weight and meeting her milestones. We expected the appointment to be routine, just another parenting box to be checked off. About a week before the appointment we had noticed that her eyes were a bit yellow and cloudy, we attributed this to breastfeeding jaundice, but figured we'd mention it anyway. Her Pediatrician concurred with our assumption, but suggested getting a quick poke for a bilirubin level anyway. The lab results came back later that night, followed quickly by an after hours call from the pediatrician. Maya's bilirubin levels were very, very high.
Notes were sent, calls were made, and the health care machine sprang into action with dizzying speed. Early on 8/28/20, Maya endured a 6 hour surgery that first diagnosed her with biliary atresia (BA) and then attempted to resolve it with a treatment called the Kasai procedure. For the next week, Maya remained in the hospital recovering. Lindsay and Mason took turns at bedside, helping her slowly adjust back to bottle and breast feeding and transition from IV to oral medications.
Biliary atresia is a disease of the bile ducts that affects infants. The exact cause is unknown. Bile is a digestive liquid that is made in the liver. It travels through the bile ducts to the small intestine, where it helps digest fats. In biliary atresia, these bile ducts don't develop normally, they're narrowed and blocked at birth. This causes bile to remain in the liver, where it starts to destroy liver cells and cause cirrhosis, or scarring of the liver. Unfortunately, there is no cure for biliary atresia. The only treatment is surgery, the Kasai procedure, in which the blocked bile ducts outside the liver are replaced with a length of the baby’s own intestine, which acts as a new duct. The aim of the Kasai procedure is to allow drainage of bile from the liver directly into the intestine. In babies who respond well, jaundice and other symptoms usually disappear after several weeks. In cases where the Kasai procedure does not work, the problem often lies in the fact that blocked bile ducts are “intrahepatic,” or inside the liver. No procedure, except for liver transplant, can fix blocked intrahepatic ducts.
Maya's older brother Lucas (almost 3 yrs old) was very well taken care of by some of our wonderful friends and family while we were spending most of our time at the hospital. Toddlers thrive in regularity though, and the poor guy was pretty distressed by the time we brought Maya home on 9/2/20. We enjoyed a wonderful 15-20 minutes of relaxation and relief before he made it very clear we had a steep hill to climb to reestablish some normalcy and security for him.
As of this writing (9/22) Maya is doing well. She's been a very happy and absolutely adorable little girl since she's been home, with no trace of the colicky behavior she exhibited prior to the diagnosis. We give oral medications twice a day, and are monitoring her weight and stool color (green is good). We also take her in to get blood drawn for labs every 2 weeks at this point. The hope is that she will continue to improve on all measures and that the need for a liver transplant will be delayed for as long as possible so that she can get bigger and more capable of tolerating that big surgery.
Some background on the disease can be found here: https://liverfoundation.org/for-patients/about-the-liver/diseases-of-the-liver/biliary-atresia/