William’s Story

William was born on 30th July, 2004, 11 weeks prematurely. He had lots of complications with his prematurity, including chronic lung disease and, when he finally made it home at 3 months old, was on oxygen.

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Throughout William’s first year, his lungs were the main reason for concern. His oxygen requirement was growing and he was in and out of hospital with lung infections. William was also struggling with feed and had constant diarrhoea but this was in the background as his chest was life threatening.

When William was 15 months old, tests revealed that his bowel was not moving properly and reflux  of stomach contents, including stool from his bowel, was causing his lung problems. He had an operation to prevent reflux but further tests showed his bowel had failed and so he was placed on intravenous feed, TPN. After a few months, we learned how to do TPN at home and William finally got home to his family. The first year on TPN wasn’t too bad, just the odd infection but after that William’s condition deteriorated. His intestines leaked bugs into his blood stream, causing almost constant septicemia. Mercury Ward became our home.

In November, 2008, William had a small bowel transplant. He was so poorly that he was in theatre having an emergency operation when the transplant call came and we had been told he may not make it through. We were packing to be transferred to intensive care after that operation when we were told to continue packing but we were going to Birmingham for transplant instead.

William’s transplant saved his life. He may have had only weeks, even days without it. Transplant is not a cure though. Life after transplant is a chronic condition in itself. William has been very well since his transplant but has spent long periods in hospital. Even a 24 hour stomach bug can lead to 3 months in hospital back on TPN.

On the whole, life was very good and Wills was thriving until January this year. William woke up with a huge stomach and massive stoma output. We ended up in our local hospital with Wills so dehydrated he was in renal failure. He was transferred back to Birmingham where doctors were concerned how malnourished he had become. He was placed back on TPN. After three months of tests and time waiting for his bowel to improve, we were transferred back to Chelsea and Westminster to train once again for home TPN. Wills has been on TPN ever since. He has now been diagnosed with graft (transplanted bowel) failure caused by chronic rejection. Last month he was re-assessed for transplant and found to need a second small intestinal transplant. We are now waiting to find out whether he needs a liver this time too. Very few children have had second intestinal transplants and no one has yet survived a combined liver and intestinal re-transplant in the UK so life is, once again, precarious and every moment precious. Nonetheless, we are positive Wills will be a groundbreaker and do well. We are thankful to his teams at Birmingham and Chelsea and to the donor family who said yes to giving their precious daughter’s bowel to him and giving him life.

This was written in January 2015 and will be updated soon – for ongoing news please check our Twitter feeds or Facebook page.