Toby was born on 26/12/04 following a normal pregnancy. He is our third child, with an older brother and sister. Within a few hours of the birth it became clear that Toby was having difficulty breathing. A heart murmur was detected and when his condition continued to deteriorate he was transferred from our local hospital to Southampton Pediatric Intensive Care Unit.

Toby had not yet ‘poohed’ spontaneously, so within a few hours of being at Southampton was diagnosed with Hirschsprungs Disease (long section).  It transpired that his distended stomach was the cause of the respiration difficulties and 8 days after birth was given an Ileostomy.  

Due to infection Toby took a further 9 weeks to recover in hospital. During this time he was given additional diagnoses of a pulmonary stenosis and Absence of Corpus Callosum. It was at this point that Mowat Wilson Syndrome was mentioned and tested for. At the age of 6 months a positive diagnosis was confirmed.  

Toby left for home with a Naso Gastric Tube still in place, after having had one virtually throughout his stay in hospital. It was finally removed when he was about 16 weeks old.  

At the current time Toby is awaiting a catheterisation procedure to correct his stenosis and at some point in the future will have a pull through operation to reverse his Ileostomy.  

As far as development is concerned, Doctors have been unable to say what may or may not happen in the future, as each child with this syndrome seems to be quite different. Toby has a lot of physio and occupational therapy and is a very happy, sociable, lovable child. Toby smiles, ‘laughs’ and makes simple sounds. He can hold his head up and is working towards being able to sit unsupported. He has strong legs and enjoys pushing up to stand (when held) and using his door hung bouncer.  

At present Toby is being fed baby food, in addition to the formula milk prescribed, as he is unable to digest normal formula. Toby continues to thrive, but his growth is considerably slower than children of the same age. On a day to day basis the only things that cause any difficulties are feeding issues due, we think, to digestive problems. He does have occasional and spontaneous bouts of wicked temper and we are on constant watch for the possible onset of epilepsy.  

People always say that he looks so normal and in many ways he is. Hopefully he will continue to be so.

Written by:
Steve & Tracey Page, Toby's parents

Toby's update  January 2007

Toby is now 2 years old and has had a difficult time in the last year.  Failure to thrive, vomiting and prolonged feeding problems have meant frequent hospital admissions and many tests. Fortunately, these problems seem to have finally been solved. Toby now has very effective medication for poor gut motility, reflux and salt deficiency (salt deficiency will suppress appetite and stunt growth). His feeding tube has been removed and he now enjoys a relatively normal diet of pureed foods and popular snacks. He is beginning to grow well, grow out of some of his clothes at last and generally look more his age.  

Developmentally, Toby has struggled to make much progress due to his prolonged health problems, despite weekly play therapy and physio. He has yet to crawl, but can roll everywhere and get up onto all fours. He sits unsupported and plays freely with toys and anything else he can get his hands on! Whilst lacking coordination, he is physically very strong and can be a bit of a handful if he decides he doesn’t wish to cooperate. He loves rough and tumbling with his brother and sister and has become a bit of a telly addict, particularly enjoying ‘Big cook, little cook’ ironically enough. Toby doesn’t speak yet but makes plenty of noise and has got the temper of any other two year old! He loves music and singing and has a great sense of humour. Though generally very sociable, Toby needs to be given time to become familiar with new people and places and can initially be shy and withdrawn when confronted by something new.  

Hard work? Yes, undoubtedly but very rewarding work too. We all love Toby very much and are constantly amazed by his ability to bounce back and remain so cheerful. He brings a smile to everyone he meets and is loved by all, but most especially by us!  

Steve and Tracey Page, Alice and James.