Four-year-old Harrison has alagille syndrome and has been on the waiting list for a liver transplant since April. His mum, Kirsty, describes the impact of his condition on the family and explains how British Liver Trust’s Children’s and Families’ services help.
Harrison is a strong little boy who pushes through life. We talk to him about his condition, so he knows that he needs a new liver, and this is why he is a different colour to other children. This helps him understand and to explain that his ‘new liver’ will mean that he will feel better and stop itching (hopefully).
Of course, we know that he’s not just on the transplant list for quality of life – it is for survival.
Harrison itches like crazy day and night and causes open wounds that are hard to get to heal due to constant itching. He screams in pain and gets very distressed- this is heartbreaking to hear day and night. He has really high cholesterol, which causes lumps all over his body. His hands, feet and elbows are awful and very painful if he knocks them.
Alagilles doesn’t only affect the liver and last July Harrison underwent open heart surgery which was very traumatic for him and us as a family. We were in hospital for just over two weeks. However he has healed so well, the scar is hardly noticeable to us now and crucially it has allowed him to be able to be active on the liver transplant list, which we are grateful for.
In September Harrison started in reception (big boy school as he puts it). He goes full time, loves it and is absolutely smashing it daily. Never did we think that the day would come that he started mainstream school. We are so proud to see what he achieves on a daily basis and couldn’t ask for a more resilient child.
Our family life is tough, but we just deal with what comes our way and carry on doing what we do. It’s very different to the life we had before Harrison, but we try to keep life happy and as ‘normal’ as we can.
Our 11-year-old daughter, Thea, is just THE BEST big sister ever! She absolutely adores her brother and is very protective of him. We really appreciate that as parents we have got two amazing children and are very lucky to have them so happy and enjoy life as they do.
We do miss our family holidays abroad, but Harrison’s needs are so complex that we haven’t been able to fly. It would cause so much stress and anxiety. He is dependent on his nasogastric tube for food so the amount of equipment and medication we would need to take would be overwhelming, plus there would be the worry of him falling ill whilst in a different country.
So, we haven’t been on an aeroplane since 2019. Instead, we have been able to spend quality family time together by holidaying in this country. Thea accepts this in the way she accepts the many ways in which her world has been turned upside down due to having a brother with complex health needs.
Hospital stays are certainly disruptive to family life and again, tough for Thea as she has to deal with the constant battle of only having me there whenever I can be there. That’s a hard pill to swallow as parents. That being said, I cannot praise the team on Ward 8 at Birmingham enough. Our specialist liver nurse, Kylie, is an absolute angel. I honestly couldn’t this without her. And having other parents to talk to is a help too, especially when you are in for a long stint.
I think the hardest part of having a poorly child is:
Watching him suffer
Seeing him in pain
Hospital stays
No sleep
Seeing his sister get upset.
People stare at Harrison and comment on his colour and ask us what’s wrong. This doesn’t really bother me, but Thea gets very upset and overprotective when this happens.
Harrison on the other hand completely owns it. For example, when a child at school asked him ‘why have you got a green face?’ he replied ‘ It’s not – it’s yellow!’
It completely breaks mine and Mark’s hearts to watch our baby go through all of this from birth and just suffer daily. We have to juggle Thea’s school and activities along with monthly visits to Birmingham Children’s now he’s on the transplant list, as well as our jobs.
The Children and Families team are fabulous and are always there. If we need help or advice, then we know where to go. The education packs they provide have definitely helped Harrison’s school to accommodate his needs. There are so many ways that we’ve had support, and we are forever grateful that they exist.
