Kingston was born in April, 2019. By all accounts, he was seemingly born to be a healthy 6lb6oz full term baby. I took him home at 3 days old, with no indication anything was wrong with his health. At his 2 week appointment, his pediatrician was concerned he hadn’t gained much weight, still not having reached his birth weight again. As I was exclusively breastfeeding, the doctor was just initially concerned he wasn’t able to transfer enough milk or I wasn’t producing enough milk for him. I was instructed to pump & feed him formula to help him gain weight & nothing worked. The pediatrician ordered a chest X-ray, an ultrasound of his abdomen and bloodwork. Everything was basically normal except some elevated liver levels. His doctor said that we should just repeat his labs in a week. I stayed the course, and brought him back for labs. That’s when our lives changed forever. Kingston’s liver levels were all very elevated, and his doctor said there was something seriously wrong with him, and We had an appt the next day at UCSF with the GI clinic. Her suspicion was Biliary Atresia. I stayed up all night googling this life threatening disease. I packed a bag, because it seemed highly likely it would not be an appt we’d be sent home from. I screamed and cried and prayed.

At the hospital, many tests were run, ultrasounds, a biopsy of his liver, and ultimately exploratory cholangiogram that definitively diagnosed biliary atresia. He underwent to only treatment surgery for BA which was called the Kasai procedure. They gave me stats. 30% of Kasai procedures are successful long term, 30% are initially successful and then fail, and 30% fail altogether. The only way to know if it works is to wait and see. We were released after 10 days inpatient, with high hopes that the Kasai would be a success, however, he still wasn’t gaining weight, and he was on 7 different meds, 3 times per day. We had frequent appointments and blood draws and his liver numbers kept climbing in the wrong direction.

Nearly 2 months after his Kasai, he was hospitalized for cholangitis, an infection that’s very common in children with biliary atresia. It was then that i met transplant surgeons. They were calling his Kasai a failure and they were going to start evaluating him for a liver transplant. We spent 3 days in that time.

On September 2, kingston was vomiting & coughing, and his team at UCSF told me to take him to the local ED. I did. After running labs, they decided the best thing was to transfer him by ambulance to UCSF. His labs were worse, and they had hoped it was just an infection and his numbers would swing back the other way, but they never did. His liver was large, his spleen large, he had a new problem with his heart, he had portal hypertension, ascites, and his bilirubins were climbing and climbing and his eyes & skin were yellow & itchy. He needed blood transfusions, albumin, Lasix, vitamin K infusions….and on September 12 after 10 days inpatient, Kingston was finally officially listed for transplant. I watched him get sicker, deteriorating day after day, and i refused to leave his side. I have a 2 year old too, so the experience was difficult on all of us.
On Oct 3, the transplant surgeon came in and told me there was a liver for Kingston. On October 5, he underwent his liver transplant. He came through well, but 3 days later went back in for internal bleeding. Oct 12, he left the PICU. On October 17, we were released to family house near the hospital. Kingston had a picc line, a JP drain from his abdomen, and an NG tube to help get him additional nutrients. To date, he now only has the picc line. I had to learn how to case for him. He also gets meds 4 times per day that must be on time, to prevent rejection of the liver. He’s on 13 different medications that are all very costly. His medical care for life will be enormously expensive. He will always be immune compromised.

He no longer has biliary atresia though, and he will be able to essentially love a normal life! This is thanks to parents that made the decision to donate the organs of the precious child they lost. They are our heroes. We will be forever grateful for their gift of life.