This page is contains a brief history on Scott and is hoped that any other parents that have children with similar problems can read about our trials and tribulations.

If you have any questions or queries regarding Scott, please feel free to contact us.

Scott was born on the 3rd of May 1993 at Queens Medical Centre, Nottingham. He was born with a Diaphragmatic Hernia which in crude terms means that his stomach and bowel had formed where his left lung should be, because of a hole in his diaphragm. This then prevents the left lung from forming properly. This was repaired 2 days after he was born by an excellent consultant paediatric surgeon at the Queens Medical Centre.

After the diaphragmatic repair, Scott still was having problems feeding, and was found to be having Gastro-oesophageal reflux, this is where the muscle at the top of Scott's' tummy wasn't closing tightly enough to keep the stomach acid down, and also the muscle at the bottom of his tummy, was too tight and not letting very much of the stomach contents to pass through, This amounted to Scott having severe reflux (constantly vomiting!). A Pyloromyotomy was tried to tighten the top muscle and loosen the bottom muscle, but this didn't improve things.

After a few months, Scott had a Thai fundoplication / gastrostomy and a feeding jejunostomy. This enables him to be fed via a tube into his intestine and he has a bag connected to his tummy to drain away the excess stomach fluids. This gastrostomy bag needs emptying every 3 - 4 hours (night and day) and the contents fed back into him via his jejunostomy as a bolus feed.

Scott is nil by mouth and receives all of his nutrition via a kangaroo pump into his jejunostomy.

In the early years Scott had a very bad aversion to food, either watching other people eating or even holding food. This has got better as he has got older, and now he's happy to hold food and he even puts food into his mouth!. He even went through a faze of eating OXO cubes! (when we say eating, he doesn't actually eat the food, he just mouths it, even mimics chewing, but spits out the food, normally over his mom!)

Over the last five years Scott's medical needs have changed, and it's been a difficult struggle to keep up (especially for his mom, Tracy). He needs supervision 24 hours a day, every day, he cannot wash himself, dress or undress, and has never had a bath or been swimming (although with the help of a company called AquaSheild who are developing a special water guard to cover his chest and tummy, he may well soon have his first proper bath!)

Scott originally was to go to a special needs nursery, and then a special needs school, but with a lot of help from the local school (Amington Heath) he now goes to normal school and is happy, stable and has quite a few friends.

Scott's jejunostomy doe's not have it's balloon inflated, and is held in place only by his dressing, and can be removed if pulled. Another common problem is the tube becoming blocked, and having to be replaced. This happens even though the tube has been flushed through with water after feeding or giving of medicine. If anyone reading this has similar problems and can give us some advice, then please feel free to do so.

January 2000
Scott has had his gastrostomy tube replaced with a MIC-KEY button. This button uses a special lock that allows a feeding tube to be kept in place. This is a major step forward for Scott, It is hoped that in the future he will begin feeding via his gastrostomy, only time will tell!

April 2001
Scott went into hospital to have his jejunostomy site closed, he stayed in hospital for about a week and the operation went perfectly and now he is fed via his gastrostomy. Scott has come a long way in such a short time and seems to be exceeding everyones expectation. A big thank you to all the staff at the Queens Medical Center - Nottingham for all their care, support and professionalism without which we would not be here now.

May 2002
Scott had just celebrated his 9th birthday, If either myself or my wife were honest we would have to admit that we never thought Scott would reach this age. Scott's a very brave, loving, joyful soul and because of his hard work through a lot of pain and tears has come an almost impossible distance in the last 9 years.

January 2007
On the 1st of January 2007 Scott went into Nottingham hospital once again for more surgery, this time it was to remove his gastrostomy feeding button! As Scott has got older and as his body has developed Scott has been slowly able to eat more food and keep them down, so much so that he now eats 100% of his food orally and not through his gastrostomy. Due to him having very severe sores around the site of the gastrostomy and Scott reliance upon it becoming less and less it was decided that it was time to remove his gastrostomy feeding button.

Scott's surgery went extremely well and after only a couple of days in Nottingham hospital he was allowed home.

Scott is now fully recovered and eating like a horse, he still has lots of pain and problems with his stomach including vomiting but we are all amazed at how well Scott has coped and has developed through his illness.

Scott - We love you very much and are very proud parents.

February 2008
We have yet another reason to be proud of Scott, last Sunday he took and passed his Karate Black Belt!

Scott has been training for the last 5 years, attending lessons at least twice a week as well as numerous courses and he has always trained hard and tried his best and this all helped him when he attended a gruelling 4 hour examination that accumulated in him passing his Karate Black Belt.

Scotty – Well Done Mate, We love you loads!

If you have any comments on this page, please feel free to contact us.

You can also check out www.tofs.org.uk for more information on children with eating problems. and also www.cherubs-cdh.org