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I know how lucky we are – Margaret’s Story

Margaret has been an office volunteer for CLDF for 27 years. Thirty years ago, this month, her son, Chris, received a liver transplant. Here is her story.

Chris had been a healthy child. He was 13 when I took him to the doctors for a routine appointment and the GP noticed that whites of his eyes were yellow. He referred him for blood tests which were not conclusive, so he was sent to what was then East Birmingham Hospital (now Heartlands) where they had a unit for infectious diseases, as they suspected that’s what it might be. Following further tests, he was diagnosed with Wilson’s Disease. The hospital told us it was so rare they hadn’t seen a case for 10 years.

Following his diagnosis, Chris was on medication for a few weeks but then suddenly deteriorated and he was transferred to Birmingham Children’s Hospital to the care of Dr (now Professor) Kelly. Back in January 1991, the liver unit which is now so well established was just four beds at the end of a ward. The staff there were able to stabilise him, but Dr Kelly told us his liver could not be saved and that without a liver transplant he would last only a few months, possibly weeks.

It was an unreal feeling to be told this about a child who just such a short time ago appeared perfectly healthy. At that time, paediatric liver transplants were not as common as they are now, and we knew that there was a one in five chance that he would not survive. However, without it, he had no chance, so we took him home to await the all-important call. It was a very difficult time for Chris because he had to isolate completely, he couldn’t go to school or have any friends round, neither could he be left alone.

Seven weeks later got the call to say that a liver was available. My dad came to stay with my younger son, Stephen, and Chris, my husband Mike and myself all went to off to the Children’s Hospital. After tests to ensure he was fit enough for surgery, Chris was taken to the Queen Elizabeth hospital for his surgery early the next morning (they didn’t do the transplants at the Children’s at that time) which happened to be my husband’s birthday. I even remembered to bring his cards! The operation lasted seven and a half hours. When we were finally allowed to see Chris, he was on a ventilator so couldn’t speak but the staff had given him a whiteboard and pen. Chris asked what day it was and when we told him he wrote Happy Birthday Dad. It was an indication of how well he had pulled through and how his recovery would progress. The following day he was transferred back to the children’s hospital where he spent 15 days before being allowed home.

Chris in 1991 three days post transplant 

As Chris continued his recovery at home, we began to realise how lucky we were. He has a strong constitution and when it came to his health, always did as he was told. He never doubted that he was going to get better, always took his tablets, and couldn’t wait to get back to normal life where he was keen to have the minimum of fuss.

It was during Chris’s time in the Children’s Hospital that we met Catherine Arkley from Children’s Liver Disease Foundation, who explained that this charity was for families like us. I can’t describe what a relief it was to know that such a charity existed. Up until then we had felt so alone. We had never heard of childhood liver disease and didn’t know anyone else who had been affected. CLDF was very different in those days. There wasn’t a huge range of leaflets or a website, but they were able to put people in touch with each other and that meant a lot.

So, when I saw three years later, that CLDF were looking for office volunteers, I jumped at the chance to give something back and I have been there ever since! I mainly help with mailings and making up information packs, and anything that requires handwriting, which frees staff up to do other work. Obviously, I haven’t been able to go in for the past year due to Covid but have been doing work at home and I’m looking forward to when I can go into the office again. With volunteering I firmly believe that you gain as much as you give.

Thirty years after his transplant, Chris continues to do well. He works part time at Asda in the warehouse. The hours suit him as he does get tired but it’s an active job which he enjoys.  His health has been generally good in the 30 years since his transplant and apart from six monthly check-ups and medication he lives a normal life. Chris has always maintained a positive ‘take each day as it comes’ attitude which I believe has really helped. We know how lucky we have been as a family which is why I’m so keen to help other families as we know just what they are going through.

Chris at Polperro in 2018 

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