"Throughout my whole journey with Fraser, I have used the Children’s and Families Service whenever I have needed to."

Thank you to Alison for sharing the story of her son Fraser, who underwent a liver transplant this summer. 

Fraser was born with biliary atresia in 2013 and underwent a Kasai procedure when he was nine weeks old. The Kasai was a success and for several years after that he was pretty healthy and we got on with family life.  

At the age of five he developed portal hypertension and after that required yearly scopes to check for varices. In March 2021 he had his first variceal bleed and was transferred to Leeds for further investigations. The same thing happened in September 2022 and at this point a TIPS procedure was first discussed. This was carried out at Leeds in December 2022 in order to alleviate pressure from portal hypertension.  

At this point, the doctors made it clear that we were more likely talking about when Fraser would have a transplant rather than if. In March 2025 Fraser was unexpectedly diagnosed with type 1 diabetes. This resulted in him having an episode of cholangitis, and we were then told that it was time to talk about transplant.   

The following month we travelled down to Leeds from our home in Scotland for the transplant assessment week in Leeds. As he had been recently diagnosed with type 1 diabetes and was fast tracked for an insulin pump to aid the control, it was agreed that he would not be listed until after he had received the pump. So, he was officially listed in July 2025 and 10 months later, in May this year, we got the call.  

Throughout this whole time, Fraser coped very well both with liver disease and diabetes, probably because biliary atresia is something he has grown up with. He has a very pragmatic approach of just getting on with it. During his time on the transplant list, he struggled with fatigue as it is frustrating not keeping up with his peers. He also didn’t like to talk about what was happening –  he was aware and understood but didn’t really want to talk about it. Similarly he is independent in his diabetes management with very little adult help.  

Of course, childhood liver disease affects the whole family and Fraser’s sister, Isla, who is five years younger than him has grown up hearing us talk about appointments and him taking medication. We have always answered her questions and spoken to her about it in an age-appropriate way. When Fraser was listed for transplant, we spoke to her about it and explained why it was happening and used books from Children’s Liver Disease Foundation and Wee Scottish Livers to help her understand. I think the most difficult thing about that from the family point of view was the uncertainty of it all. We were lucky – the first call was the only call but waiting and not being able to plan ahead was incredibly difficult for us all.  

Our call came at 5.30am and by midday Fraser was walking to theatre after a very stressful drive from our home to Leeds, with transplant coordinators phoning to check on our progress! My husband Andy and I travelled with Fraser, leaving Isla at home with Grandma and Gramps. We were able to get accommodation in Eckersley House which made such a difference. On day 6, Dad went home to see Isla for the weekend and brought Grandpa back down for a visit which was nice. Isla, Grandma, Gramps and Auntie Les also made it down for a visit before we were discharged.  

Fraser spent three days in PICU after his surgery and was then moved to L50, the liver ward. In total he was in hospital for 12 days and was delighted to be discharged.   

His recovery has been good. Obviously, he feels much better, which always helps. His blood pressure was high post-transplant, and he is currently on a few antihypertensives, Glasgow are consulting with renal to help reduce this. His TAC levels have needed tweaking fairly regularly which has meant we’re still between 7-14 days for bloods, but hopefully that will stretch soon as it all stabilises.  He has continued his pragmatic approach to health management post-transplant and dealt amazingly with all the blood tests and medications required of him.  

Our summer term finishes at the end of June, so Fraser missed the last four weeks of school as well as the first two weeks of this school year. This has been amazing in terms of minimising time away from school, but it did mean a long summer of isolation. Luckily the good weather meant that he was able to see one friend outside at a time and these visits helped him through the isolation period. I did feel emotional watching him walking off to school on his first day back, but he just carried on with his friends like it was any other day!  He didn’t need a phased return and has managed well since he’s gone back.  

The school has been incredibly supportive in his absence. I kept his pupil support teacher updated throughout his recovery and we had a meeting before he returned to ensure that everything was up to date. Due to the timing, he missed very little work, and all teachers have been understanding if he has missed something. He used Google Classroom to do some tasks when he felt up to it.  

Throughout my whole journey with Fraser, I have used the Children’s and Families Service whenever I have needed to.  We first met Kate at one of the Scotland family weekends which Children’s Liver Disease Foundation ran, and she was always so welcoming and kind. I took part in a wellbeing workshop for parents around the time of Fraser’s TIPS procedure where she helped me to ensure I made time for myself and how to best regulate my feelings along with Fraser and Isla’s. She has also been able to provide information for us regarding the TIPS procedure and transplant assessment. To us, Kate is a valuable member of the team who is always at the end of an email or phone to provide some calm in times of need. I contacted her post- transplant, as I knew she would want to know and she kindly gave us a monetary donation, which we used to pay for a treat or two for Fraser and Isla during the isolation process.  

Although I stayed off work for a few weeks after Fraser returned to school, to ensure he was coping well, I was craving normality and routine. The house is now all back to our new normal, and it’s good. He takes his meds on time and without reminders (apart from phone alarms) which is great to see. He has returned to Boys’ Brigade, basketball training and has enjoyed going back to the gym too. He has also been able to attend a BB camp and took responsibility for all his medications for the weekend which I saw as a big milestone!  

 Although Fraser took everything in his stride throughout the whole process, he admits that every time the phone rang, he would feel jumpy. As he says now: ‘I have way more energy and I feel stronger’ and for that we shall be forever grateful to our donor family.  

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