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Waiting for a transplant Lives lost waiting Recipient of a transplant Giving the gift of life

This is an account of William's life before he got his life-saving transplant, written by his mum in 2008.

William Milne is 4 years old. He has two sisters Hope, who is 12 and Ellie, who is 9. His mum Sarah talks about William’s urgent need for an isolated small bowel transplant.

William was born 11 weeks prematurely. He did very well initially but had a series of chest infections in his first two months of life that resulted in his lungs becoming damaged to the extent that he required oxygen twenty-four hours a day. His oxygen requirement increased during his first year and he struggled with recurrent chest infections and difficulties with feeding and gaining weight.

Eventually, William was diagnosed with severe reflux and, at 15 months old, had an operation to prevent anything from coming up from his stomach and to insert a feeding tube to help with his feeding. He was able to breathe without oxygen within a week of the surgery. Unfortunately, our happiness and relief was only short lived. William was producing a huge amount of green bile from his tube which meant that he could not take feed through it. Each day we were told it was because of the operation and he was just taking a bit longer for things to settle down before we would be able to start feeding him. However two weeks passed with William unable to feed and, eventually, William was started on TPN – total parenteral nutrition. This is an intravenous feed given through a central line placed through the large neck veins straight to the heart. The feed is individually made to contain all the nutrients needed.

William was transferred to a specialist at Chelsea and Westminster Hospital where we learned William had intestinal failure and was ‘unfeedable’. We were told straight away that the only cure for the condition is a small bowel transplant. Small bowel transplants have not been performed for as long as other organ transplants and, at the moment, can only be offered when an individual is unlikely to survive 12 months without one.

William’s main complication has always been infections caused by bacteria getting into the line feeding on the TPN. This can quickly lead to a life threatening infection. We have had many scares, including a full scale crash call because of such infections and they can come in within minutes with no warning. These infections are now coming so frequently that it is getting almost impossible to keep William infection free and he has to spend most of his time in hospital. The situation is extremely dangerous. William’s general health is deteriorating and his life under constant threat.

William is now waiting for a small bowel transplant. It is his last option. Every other possible treatment and attempt to get his bowel to accept even the smallest amount of very dilute feed has failed. We are optimistic a donor will be found in time for him but it can be hard to remain so. William’s donor will have to be a child, teenager or very small adult. On average, only 25 children donate organs each year and we have been told there are about 3 situations a year that would provide the right bowel for William. It must be so difficult to ask a parent to consider donating their precious child’s organs and my heart aches for the wonderful family who we hope will save our son’s life.

What is most devastating for us is that intestines are not listed on the donor card or forms. That means our donor would have to be someone who was willing to donate any organ. This significantly reduces William’s chances. We know that intestines are being wasted when other organs are donated and, as a result, some children waiting for small bowel transplants die before they get their call.

It is very hard for us to watch our son become sicker like this and even harder to see him playing happily with his toys and then suddenly become floppy, shake and go blue with another life threatening infection. We have come very close to losing him too many times. Every day I hope and pray we get our call.

Sarah keeps a blog about her journey with William at www.sarahmilne.blogspot.com.