Nova’s fight with Biliary Atresia

Novalynn was born on May 30th, 2018. She’s a beautiful, happy, and healthy baby we thought. Most babies are born jaundice and doctors will say “it’ll pass” but in our case Novalynn’s yellow skin tone and eyes were not clearing up. When she was 2 months old I decided to switch pediatricians and get real answers as to what was going on with her. I was told to see a GI doctor immediately while she was still young enough. After making appointments and seeing a specialist, she was sent to the hospital for an ultrasound and a HIDA scan for 2 days in a row. That third day comes along and I’m at home with Novalynn going about our day when I received a call that my daughter was diagnosed with biliary atresia.

• •  Biliary atresia is a rare disease of the liver and bile ducts that occurs in infants. Symptoms of the disease appear or develop about two to eight weeks after birth. Cells within the liver produce liquid called bile. Bile helps to digest fat. It also carries waste products from the liver to the intestines for excretion. This network of channels and ducts is called the biliary system. When the biliary system is working the way it should, it lets the bile drain from the liver into the intestines.
When a baby has biliary atresia, bile flow from the liver to the gallbladder is blocked. This causes the bile to be trapped inside the liver, quickly causing damage and scarring of the liver cells (cirrhosis), and eventually liver failure, leading to a liver transplant. ••


My heart sank too my stomach and I instantly called her father Randy. A specialist at Beaumont royal oak insisted that we come up to the hospital right away to talk further. After our meeting with the doctor to talk about what Biliary Atresia is and what the future holds.. we were told she could have surgery at Beaumont or she can be admitted to the University of Michigan in Ann Arbor. We both decided that U of M was the best place for our daughter and she was admitted that evening. A week later she went in for a major surgery to have a Kasai Procedure. 

•• The Kasai procedure involves removing the blocked bile ducts and gallbladder and replacing them with a segment of your child's own small intestine. This segment of intestine is sewn to the liver and functions as a new extrahepatic bile duct system. ••

After many days and nights in the hospital, Dad and I recently got the new that her Kasai Procedure is failing and she will need a liver transplant very soon. The hospital has become a second home and we have a long road ahead of us for our baby girl. With the hospital not being close to home, medical bills becoming high, and many other things, Dad and I are in need of help. I stay every second of everyday with our baby girl at the hospital while dad works to try and provide for us. We are thankful of anything we receive that will help us along this journey and we’re so thankful of everyone reaching out and supporting us along the way. Anything helps for our baby girl and we can’t thank any of you enough that do donate. ❤️