Biliary Atresia

My name is Natalie Williams and I was born on August 29th 1997, along with my identical twin sister Kathryn. At first we were both declared healthy but a few weeks later I began to show the signs of being a very ill baby. My skin was very jaundiced, my stools were chalky white and I wasn’t gaining weight due to vomiting after every feed. After many visits to the family doctor I was finally referred to a specialist and was diagnosed with Biliary Atresia at 9 weeks old.

Biliary Atresia is a rare, life-threatening childhood liver disease which has no known cause and no cure. A few days after diagnosis I underwent an operation called the Kasai Procedure which is used to buy time and hold off the need for a liver transplant, after a months recovery in hospital I was finally able to go home to my family. Growing up I did very well for a Biliary Atresia kid, especially considering that the majority of patients end up needing a liver transplant in their toddler years. By the age 3 I was off all my medications and despite regular appointments with my specialist, and occasional trips to the operating room for endoscopy and biopsy procedures, I lived a normal life, I was thriving.

It wasn’t until around 13 years of age that life became a bit more difficult as I began to develop complications from the Biliary Atresia, such as portal hypertension and a very enlarged spleen. Due to this the need for more regular appointments, and monitoring through tests and scans, increased. Over the next few years the struggle inside my body became more apparent and slowly I began to loose the normalcy in my life. I was pulled from most sports and in my last year of high school I missed over 60 days of schooling due to being frequently sick and hospitalized and I was taking codeine for pain on a regular basis.

Shortly after I graduated high school I enrolled in pre-med at college but sadly had to be removed from the program after just one semester under the advice of my doctors and teachers due to repeated hospitalization.

In December of 2015 I developed cholangitis, a liver infection for the very first time and although I knew it was a sign my liver was struggling I was also determined to have this liver last a lifetime. However, my second bout of cholangitis came just weeks after being successfully treated for the 1st bout and the cycle continued with me developing the infection every 6-8 weeks for nearly a year. I was slowly entering liver failure and it was more painful on both my body and mind than what I’ll ever be able to explain.

On October 6th 2016 I was placed on the waiting list for a new liver and despite knowing this news was coming, it was devastating. To be told you need a transplant of any organ, is to effectively be told you will not survive without one, and also that time is now limited. I spent the next 6 months of my wait in and out of hospital constantly with infections, pancreas problems, kidney stones and lung issues, all stemming from my failing liver. Time was running out and the need for a new liver became desperate, but finally on April 17th I received the call for transplant. On April 18th the operation began and I came out of the Operating Room on April 19th with the most beautiful and perfectly matched liver anyone could have hoped for. The physical recovery, although difficult, was nothing compared to the torture my body had endured through the actual decline. It also helped knowing that I was now safe.

Today I am 13 months post-transplant as of May 2018 and am doing exceptionally well. I have had no set-backs or complications. Everything is absolutely perfect with my new liver, which my ICU team and I named Larry. The hardest part about the entire journey, which I still struggle with now, is the simple but profound truth that someone else lost their life, and this is what saved mine. What I most feared happening to me, happened to someone else. Another family lost while we gained. I do my best to honor my donor and live in such a way where they would be proud. For my first-year anniversary we celebrated by going skydiving. Larry the liver and I have also vacationed in Hawaii, been White Water Rafting and we are now getting ready to compete in both road biking and swimming races.

Due to my donor I finally feel at home in my own body and have a life time ahead of me. Not a single day goes by where I don’t think of the person who in their final hours, granted me a lifetime and of course his generous family. I strongly believe I am better for the hardships I have faced, and I am so grateful I have Larry the liver as my forever companion. It truly is an honor to be a transplant recipient.

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Last updated on July 11th, 2022 at 04:11 pm