Story written 2008

William was born prematurely and went home with chronic lung disease, requiring oxygen 24 hours a day. His condition worsened rather than showing signs of improvement and he was diagnosed with ‘presumed cystic fibrosis’ (CF). He underwent vigorous treatment for this, including frequent hospital stays for IV antibiotics and an operation to insert a port-a-cath. His health was deteriorating more rapidly than expected for a baby with CF.

He had his first birthday in hospital and was back just a few weeks later. During this admission he had several tests. These revealed that he had very severe reflux and problems swallowing so a tube was inserted through his nose, through his stomach and straight into his intestines. We waited in hospital for an emergency Nissen Fundoplication, a procedure to prevent stomach contents from escaping up into the gullet and lungs, and a gastrostomy so William could be fed straight into his stomach until he was old enough to learn to co-ordinate his swallow. William spent time in PICU following the operation and was then transferred to the high dependency unit before going back onto the ward. We were expecting to be home within a few weeks of the surgery but things did not progress well. It became clear that William’s main problems were to do with his stomach and intestines rather than his lungs. He was in intestinal failure. Nothing was moving along or being absorbed so it was flowing back into his stomach and refluxing into his lungs, causing damage and frequent infections.

After three months in The Royal Brompton Hospital, William was transferred down the road toChelsea and Westminster Hospital where they have a specialist gastroenterology team. They diagnosed that he has intestinal failure and is unable to tolerate any feed or drink. Instead, he is fed by an intravenous feed called TPN (total parenteral nutrition) given direct into his blood stream, through a Hickman Line in his chest. He is on his drip 20 hours a day. William continues to have frequent hospital stays due to very sudden and life threatening infections in his line. He can be playing happily and critically ill with septicemia within five minutes as the bugs in his intestines leak into his blood stream and infect his line. To help with this, he had further surgery this year to create an illeostomy so the fluid that accumulates in his intestines can drain out through his stomach into a bag. However, he has continued to have frequent and dangerous infections and is now showing early signs of liver disease. His future is very uncertain and his condition is considered to be life limiting with immediate threat to life because of the infections. We are currently waiting to go to Birmingham Children’s Hospital so William can be assessed for a small bowel transplant.

William needs a lot of care at home. We have appointments most weeks and William can be admitted to hospital in a life threatening condition very suddenly. Hospital stays often stretch from days to months. All this puts a huge amount of pressure on the family, especially for Hope and Ellie.

William also has cerebral palsy, affecting his legs, and uses a wheelchair when out and about. He is about to get a powered chair to help him gain independence as he grows older.

Update 31st December 2021

Hi this is William M, I am writing to request that I be removed as a pal. I’m very grateful for all that you have done for me at my most difficult years and I appreciate everyone who has kindly sent me mail that has helped cheer me up when needed. However, since I’m seventeen years old and in good health, I believe it is inappropriate for me to continue being a pal, as there are many more children who are way more in need of the post than I am. Once again I with to truly thank you all for everything

Best Wishes,

William

Update 30th November 2021

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