Hayden’s Journey with Biliary Atresia and Liver Transplant

By Heather Vanzandt, mother of Hayden

CAM00324My son, Hayden William Vanzandt, was born Oct. 17, 2012 in Seneca, Pennsylvania. Weighing 8 lbs., 6 oz., and ranging 23” long, he was a perfectly healthy baby boy, except for his bilirubin level. He had jaundice. I was told by doctors it should go away, but it never did. This continued on for two months. Finally, I told his doctor that I wanted blood work done, as his jaundice was getting worse. They complied, and referred us to Children’s Hospital of Pittsburgh of UPMC. What was to come I thought could only happen in nightmares.

The first time I ever heard the words “liver disease” was on Dec.13, 2012. The doctors explained how Hayden’s bilirubin level was very high and it could mean he has a disease called biliary atresia. If left untreated, Hayden would not live past the age of 1 or 2. I was devastated, and didn’t know how or why this happened. He was so happy and playful; how could he have this disease?

Thankfully, the amazing doctors at Children’s Hospital were able to diagnose him early and on Dec. 18, Hayden had the Kasai procedure, a procedure that is done to temporarily “fix” biliary atresia, as there is no cure at the moment. The statistics for the Kasai are not very good: Only one-third of recipients live 20 or more years with only the Kasai done, one-third live for a short while with only the Kasai before needing a liver transplant (this was Hayden), and the other one-third need a liver transplant right away, because the Kasai immediately fails.

Fortunately, the Kasai procedure was able to buy Hayden some time before his transplant: 15 months to be exact. In that short time, Hayden continued to meet his developmental milestones. We took him to see family members, enjoyed the park, and went shopping. We did everything we could to make him happy and give him a normal childhood as he had been through so much already.

During the summer of 2013, approximately six to seven months post-Kasai, he was CAM00353hospitalized for about a week with fever and bleeding issues. Fevers became a serious matter as they could mean an infection in his liver called cholangitis. Typically, they would treat this with a peripherally inserted central catheter, or PICC line, in his arm and antibiotics for two to three weeks. Hayden had about six of these PICC lines in between the Kasai and transplant. We also found out that Hayden had portal hypertension and esophageal varices, which are quite common in kids with biliary atresia. Due to Hayden’s enlarged liver, there was a great deal of pressure on his veins and blood vessels in his belly, which caused some veins to become enlarged. These enlarged veins would occasionally burst at any given time when the pressure became too great. Due to this recent diagnosis, his chances for a transplant increased significantly. The doctors were convinced it would happen within five years. Despite all of this new information, we continued to live our lives as normally as possible, putting all our focus and attention on Hayden and making him happy.

We were able to go the rest of 2013 without a single hospitalization. But when the New Year approached, the constant sickness began. Our entire household, including Hayden, was sick with the flu. On top of that, in February, Hayden had another fever and minor bleeding, which required multiple scopes over the next couple of weeks in order to treat his varices. Then, on March 20, 2014, Hayden suffered a massive bleed that required an ambulance ride to our local hospital, and he then was transported to Children’s once he was stable. Unfortunately, about 30 minutes upon arrival to the Emergency Department, Hayden had another bleed that sent him into cardiac arrest. He needed chest compressions in order to be revived. He was intubated and sedated, then moved to the Pediatric Intensive Care Unit (PICU) for a week. During that week, he had several tests and it was clear that he would need a liver transplant soon. The doctors said it would be beneficial to try to find a live donor, because this would speed up the waiting process of finding a liver for him.

Out of nowhere, a woman I only knew through a liver support group on Facebook messaged me saying that she was Hayden’s blood type (Type A-positive) and would like to help in any way she could, including being his living donor. I was flabbergasted! Here is a complete stranger offering to give part of her liver to save my son’s life!

That Monday morning, she contacted the hospital requesting to be tested to see if she was a match for my son. Normally, the tests are done in two to three days, but she was able to have her tests completed in a day since she lives in New York and was in town during the week with her daughter, who also received a liver transplant and had an appointment at Children’s. Finally, a week later, we got the wonderful news that she was a match, and the transplant would happen the following week! I was so excited and shocked; everything had happened so fast and was such a blur, but I was so happy that my little boy was getting a second chance at life because of this amazing stranger!

CAM00471Transplant day finally arrived. It was April 9, 2014, Hayden’s second birthday as we will know it from this moment on. Just eight days shy of him being 1-½ years old. My family and I were a ball of nerves. I was dreading the call that something terrible had gone wrong, or that his new liver wasn’t working properly. Thankfully none of that happened, and his surgery was completed in eight hours. He even came up into the PICU extubated. Within two days, he was in a regular room on the Transplant Unit and doing great. Within a week, we were out and about, taking strolls to the cafeteria and the gift shop, and just walking the halls. Hayden’s new liver was working perfectly, and it was all thanks to his living donor who selflessly gave of herself to help someone she had never met before. We will never be able to thank her for what she did!

Now that we are almost four months post-transplant, we are home and doing very well.  He had a mild case of rejection at the end of May, but has been on steroids to treat it, and his numbers have been improving ever since. Hayden has grown so much and is exploring everything and enjoying life with his new liver.

I am looking forward to celebrating his 2nd birthday in October and having Thanksgiving and Christmas with the family so that they can see how well he is doing. It’s hard to believe what he has been through in his short life. I still sometimes wonder why it had to happen, but it doesn’t matter anymore, because I have my baby boy with me, and I’ll always be thankful for that.

  • thesigmunds

    Your story is truly inspiring! Our son also has biliary atresia! He had the kasai at 8 weeks of age and has been good ever since. He just turned 4 in June! We live in western MD and are followed at Johns Hopkins. Would love to keep in contact. Prayers to your son and your family!! Take care!