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

William Milne received a small bowel transplant in November 2008. His mum Sarah tells us about that day, and about how life has been transformed.

This year, for the first time in four years, I am looking forward to a summer full of long days filled with family fun and outings for the first time in four years. After years of being trapped, living in hospital with the short periods that could be spent at home dominated by a sickening fear of what the next day, or even next hour would bring, this year, I really am alive again. The whole family is alive again.

The 19th November was a very frightening day. William had an endoscope in the morning to see if there were any clues at all that would help our wonderful medical team keep William alive and well enough for his transplant. Shortly after returning to the ward William became very unwell. His temperature and heart-rate were climbing and his breathing was laboured. He was grey and sweaty. Eventually, he was rushed for an x-ray which revealed that his delicate and damaged bowel had perforated during the procedure. He was already unwell with infection and now faced an emergency operation.

Everyone was worried and we were told to expect him to need high dependency nursing at the very least when he returned from theatre. I took him to the anaesthetic room and kissed him goodbye as I had done before all operations and procedures, now too numerous for me to be able to count. He had been gone less than an hour when a nurse approached me and told me the surgical team wanted to talk to me up in the theatre. I was terrified and expected they had found more damage than had been allowed for on the consent form I had signed and needed me to allow more extensive surgery. The last thing I expected to be told was that they had received a call from Birmingham Children’s Hospital to say that a small bowel had been found for William and they had decided to stop the operation and send him for his transplant. I was overcome with relief and then my thoughts turned to the donor family who had also had a traumatic day but, sadly, it had ended in the devastation that I had feared earlier. In their tragedy they had made us a gift that was about to turn our despair into hope.

William had his small bowel transplant on 20 November at seven o’clock in the morning. By the end of the next day he was recovering on the ward and already looked better than he had in the months before. He had his ups and downs during recovery and we had some scares along the way. Hope and Ellie joined us at the hospital for Christmas. I felt the magic a child feels as I thought of all we had been through that year and all we now had to look forward to in 2009.

William finally came home in February. I still get a thrill from waking him in the morning and bringing him downstairs free of the lines that bound him to his TN rucksack nearly all day. I still get a thrill from his pink cheeks and boundless energy. I still get a thrill when I put up the feed that is delivered into his stomach while he learns to eat, knowing it is being absorbed by his new intestine. Learning to eat will be a slow process but William is enjoying little licks of things, strawberry yogurt is his favourite.

I think of our donor family every day. I hold them in my thoughts and prayers together with all those still waiting for transplants. Sadly, I know of three young children who have died waiting for transplants and many more waiting on the list, like we were, hoping and praying every day that their baby will not join 1000 people who die every year while waiting for that call to say that organs have been found for them.

Please consider joining the organ donor register. It is so difficult to think of losing your child but, sadly, there are children, like William, whose lives can only be saved by receiving an organ donated by another child. I sincerely hope the unthinkable never happens to your child but, if it did, would you be prepared to donate their organs to save another child’s life?

Read about Sarah’s account of life with William whilst he was on the waiting list.