"I was told all babies are a little jaundiced and to sit him in the sun for naps. As it was November, however, there wasn’t much sun about."

We’re very grateful to Caitlin for sharing the story of her little boy Noah, who has biliary atresia.

Noah was born in the Glasgow’s Queen Elizabeth maternity hospital on November 14, 2024. 

When he was just four days old my dad noticed that his eyes were yellow. The midwife who came into us daily had already told me that he had a little jaundice, but the Bili flash test had showed that his bilirubin levels were within the average range. 

I was told all babies are a little jaundiced and to sit him in the sun for naps. As it was November, however, there wasn’t much sun about.

Because I was concerned that Noah’s jaundice was not fading, I asked my midwife if any further testing was possible. She arranged a blood test and on the same day called me to tell me nothing was wrong and not to worry, the jaundice would peak and go away. Obviously, I was relieved to hear this, but this was short-lived. That same day I received a call from a neonatal doctor at Glasgow to tell me that their lab had read the results and wanted Noah in for further tests. 

Upon arriving, the doctor had told us that they suspected Noah could have hyperbilirubin anaemia. They kept us in the high dependency ward at the children’s hospital and arranged a scan for Noah to confirm the diagnosis.  

At the end of that week, we met our liver team at Glasgow, Dr Rachel Taylor, and her nurses, Claire and Jenny. They told us that they thought Noah may have biliary atresia, that we shouldn’t Google anything and that we were being sent to Leeds Children’s Hospital to confirm the diagnosis and to have possible surgery.  

The team at Leeds confirmed the biliary atresia diagnosis and Noah underwent the Kasai procedure when he was two weeks old. Our surgeon was very reassuring. He told us that his liver was smooth, he wasn’t expecting any issues and to date, he has been proved right.   

While we were at Leeds, we were introduced to the Millie Wright Foundation who helped me and my family understand the diagnosis. And they told us about Children’s Liver Disease Foundation (now Liver UK) and provided us with an information booklet from the charity explaining more about the surgery and what we might expect in the future. 

 Noah was discharged after just 11 days in Leeds, he came off the specialist milk within a month and started to gain weight. Since then, his health has been pretty good. He did have two runs of cholangitis this year which came shortly after his one-year Kasai anniversary. Doctors have said that any further cholangitis could result in him being listed for transplant but for the moment he is doing great on Urso and Paravit. At the moment, we see his consultant every four months with bloods every two to four months depending on the outcome.   

Now he’s approaching two years old Noah is such a smart wee guy and such a brilliant soul, enjoying all the things other toddlers do. Yes, I admit I get nervous when I watch him taking part in baby rugby, but it’s great that he has the energy and enthusiasm for it and I wouldn’t want to take that away. 

I’m hoping Noah’s story will help other parents coping with a biliary atresia diagnosis realise that there is a family life to be enjoyed and it’s not all about hospital!  

Please do not reproduce or republish the patient stories on this website without our express written permission. If you would like to use this content, please email us at [email protected] to discuss. You can view our full website terms and conditions here.