Alfie’s Story

Alfie was born full term weighing 5lb 11 oz.  As the weeks went by he kept vomiting and having diarrhoea.  Changing formula did not make a difference and so at a local hospital he was given a Nasal Gastric Feeding Tube.

Alfie

Weaning became a nightmare as he kept reacting to foods. Alfie had reflux, itching and hives and his eczema became inflamed and had to be constantly wrapped in bandages.  The hospital decided he needed a Gastric Peg and was put on 24 hour feed and was not allowed anything by mouth.  He started to constantly vomit and unfortunately the operation didn’t go well.  Alfie became very unwell and after many trips back to the hospital and back into surgery, they then realised his Gastric Peg had been put in wrong.  At this point  Alfie was then referred to Chelsea Westminster Hospital and we have been coming here for the last 7 years .

Alfie was diagnosed over the years with Eosinophilic Colitis, multiple food allergies, slow gut transit, chronic constipation, reflux, eczema, and a small bladder.  He became very constipated so it was decided he needed to have a colostomy bag as the medicines were not working and a Dace for Rectal washouts.

Even with trips back to hospital and over night stays, Alfie remains in pain and is still constipated. Finally Alfie then had a illeostomy, we were still using laxatives as his bowels still stop working. At the moment Alfie is recovering from a Rectal Stump closure.  Usually after a major operation, Alfie will have to have Total Parental Nutrition through a Long Line for a while as his bowel goes into shut down mode.  As he recovers from the surgery, Alfie is then slowly weaned back onto Gastric Peg Feeds.  While being in hospital at Chelsea Westminster, we have made many great friends who are in similar positions and I am very excited at the prospect of having a proper support group for parents like me and children like Alfie as they go through so much.

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