You don’t have to deal with this alone

Darian’s baby son Wesley was diagnosed with biliary atresia in January this year. Here she shares her experience of his first few months and offers advice to other parents facing that diagnosis.  

Our son Wesley was born on November 23 2021 at St John’s Hospital in West Lothian. Shortly after his birth, he was taken to the special care unit, as there were concerns regarding his feeding and bruising. Whilst there, he was checked for jaundice and it was discovered his bilirubin count was very high. He was placed under phototherapy lamps for seven days but this did little to decrease his levels. A split bilirubin test noted his “direct” amount was abnormally high but tests and an abdominal scan conducted showed no reason behind this and doctors were hopeful that eventually this would settle down, so we were sent home with advice to attend to the hospital weekly for blood tests.

After a further two weeks, Wesley’s direct bilirubin count was still climbing and we were referred to the Royal Hospital in Edinburgh where an amazing GI doctor requested another abdominal scan. This one showed that his gallbladder was very small and it appeared his bile ducts were narrowing. The doctor contacted the team at Birmingham and within 24 hours we were advised to prepare to make the six hour drive down to get a second opinion and a potential diagnosis for biliary atresia. We had never heard of this disease and in all honesty we were really quite terrified, I made the mistake of googling things I didn’t fully understand before we got to Birmingham and truly expected the worst.

When we arrived at Birmingham Children Hospital on January 2 this year, we were greeted with the most helpful and understanding doctors and nurses. The first two days were spent conducting blood tests, scans and going over the process of diagnosis of biliary atresia and potentially carrying out the Kasai procedure. Although it was extremely overwhelming, the team there did everything they could to put our worries at ease, Wesley’s health and happiness was always a priority and I felt confident his care was in the best hands. I spoke with the Liver Direct nurses who answered all my questions as best as they could and listened to my fears and allowed me to have the space to be emotional and even have a cry. We never felt alone or confused throughout this process.

 

Wesley received his biliary atresia diagnosis and Kasai on January 4 and his surgery went technically well. We were discharged seven days later and given lots of information about what to do and who to speak to if we had any concerns. We won’t know if Wesley’s Kasai has been successful for another few months but so far, even back home, the liver team have been fantastic. We speak with them on a weekly basis and they are always keeping us in the loop with any blood results or future plans.

Wesley now has an NG feeding tube to help him gain some weight. I was initially upset at the thought of it but having reached out to other BA parents, I was assured that this would benefit him and they were right  – it’s been fantastic!  He’s gained almost a full pound and has started growing again which has really been a massive relief to us. We’re now in a little routine with his bolus feeds and pump feeding so we can finally enjoy feeding time again. It means we also get to watch him thrive and have lots of energy to be a happy little boy!

 

CLDF support

We first heard about CLDF when we were in Birmingham, we met with a nurse who works alongside the charity and she provided us with booklets on biliary atresia and answered my many questions! She also showed me where I could access more information on the website and points of contact that might be useful for Wesley as he gets older.

This was so helpful for us, especially when it came to speaking with our friends and family about Wesley’s condition; it made it so much easier than having to constantly repeat ourselves and explain it all on our own, which was quite overwhelming. We were able to either hand out the booklets or send links to the website so that people who had questions  could read up on things and get a better understanding themselves. It’s also been fantastic for when we needed to go in to our local hospital when Wesley had a suspected infection, a lot of the nurses didn’t know about biliary atresia or the Kasai procedure. I’ve actually got a few booklets in his changing bag at all times now in case a new GP or even pharmacist isn’t exactly sure what his condition really is. It’s just streamlined a lot of things for us and taken a lot of pressure off of us.

At the beginning of our liver disease journey I especially found the stories on the website really helpful and supportive. It helped us recognise that we weren’t alone and being able to read about children or adults who live with the same or similar conditions really helped me stay optimistic and hopeful for Wesley’s future.

We got involved with Big Yellow Friday this year and that in itself brought a lot of support to our family. It encouraged me to share our story, something I had been quite nervous about doing before, as no one wants to have a sick child and I was scared of other people’s reactions. But everyone has been amazing and it’s helped me form relationships with people who have medical needs and truly understand what we are going through.

I think the best advice I could give to any parent whose baby receives this diagnosis would be to be kind to yourself and enjoy every moment. There will be days that aren’t so good but these days won’t last forever, the days that are good will make up 110% for the moments where you might feel scared or upset. Don’t feel like you have to deal with this alone either. The best thing I have learned to do is say when I need help or say when I am struggling. Wesley doesn’t know what’s going on, he’s too young to understand, this is his normal. But for us as parents, we’re the ones that have to alter our lives or make changes to what we thought our future might look like and that can be really hard. You don’t have to go through it on your own. It’s okay to reach out to someone even just for a cry or a coffee to take your mind off things. I’ve joined lots of support groups and it’s been great to share and listen with others who get it.

 

This experience has felt like a rollercoaster with initially a lot of lows but now a lot of highs. Despite everything Wesley has gone through and continues to have to go through, he is such a happy and amazing little boy. He is hitting all of his developmental milestones, he loves playing with his toys and giggling at himself in mirrors. He is so resilient and has been cared for by the best people possible. We owe a lot to the teams who work had providing support and information for families and to healthcare providers as without them our journey would have definitely felt very different.