A Rare Diagnosis Brings Uncertainty for Nolan
Two-year-old Nolan is an active and happy little boy, always up for adventure. Watching Nolan play when he’s feeling well, you would never guess that he was born with a very serious and rare liver disease. Several times a year and without warning, Nolan will develop a fever and have to go into the hospital for weeks at a time.
Nolan’s mother, Deirdre, remembers very clearly the day her son was diagnosed. At only six weeks old, he needed surgery to remove a cyst from his liver. After the operation was complete, the doctor brought Deirdre and her husband into a room to talk. Deirdre knew then that something more serious was wrong.
They soon learned that Nolan had biliary atresia, a liver problem where the bile ducts are damaged, missing, or not shaped correctly. The harsh truth was that their precious baby boy would most likely need a liver transplant to survive. “Hearing the news, of course you’re overwhelmed,” says Deirdre.
“Especially when it’s a surprise. We didn’t know going into the operation that this was more than just a liver cyst.”
Deirdre’s mother stepped in to help. In addition to looking after Deirdre’s older son, Jett, she began to do some research online. That’s when she stumbled upon our website at liver.ca and passed it along to Deirdre, who was still in shock as a result of baby Nolan’s diagnosis.
After spending time on our website, Deirdre slowly came to realize that her family was not alone and that there was support for them out there. “I feel like [without the Canadian Liver Foundation] there wouldn’t be enough knowledge available,” says Deirdre. “People need to be educated if this happens to them.”
In an attempt to prevent his need for a liver transplant, Nolan has since had a Kasai procedure. During this surgery, the surgeon removes problem bile ducts and attaches the small intestine directly to the liver in order to allow bile to drain.
Armed with heaps of new knowledge into what life may look like for their son, Deirdre and her husband are prepared to tackle whatever comes next for Nolan. They’ve settled into the routine of daily medications, and hope to keep his hospital stays to a minimum and delay or avoid the time when he will need a transplant.
“My dream for Nolan is that absolutely nothing stops him from seizing the day and making his own dreams come true,” says Deirdre.
Learn more about biliary atresia by visiting https://www.liver.ca/patients-caregivers/liver-diseases/biliary-atresia/