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Written by Steve Page (Toby's Dad)

Hi to all you Dads out there who have a child diagnosed with Mowat Wilson Syndrome. This is my account of how we found about Toby having MWS, how I’ve dealt with the news (or not, as the case may be), daily life with a baby with so many ‘issues’ (Jesus I hate that word) and my hopes and fears for the future.

I’ve written it with Dads in mind as it quickly became clear to me that us blokes deal with things very differently to our wives or partners. In my opinion we are assumed to be less emotional and must keep a stiff upper lip when we receive the news that brings our world crashing down. I think there is some truth in this, at least for me anyway, but I hope that what I have written will go some way to show that bottling things up is not good for you or family relationships.

Of course, everything I have written is an account of my own thoughts and interpretations on what’s happened. There are no books written on the best way to deal with endless bad news, culminating in being told that your child has a ‘syndrome’ and I make no apology for some of my responses.

Things started badly for me as a Dad when Tracey was taken into hospital by ambulance at 4 am on Boxing Day. I had to stay at home with our two other kids until their Nan and Grandad got down from London . I very much saw my place as being with Tracey, being useless up the head end, holding her hand, mopping her brow and being all supportive. As it was, the birth was over nice and quick as Tracey had a pre-booked caesarean section at Dorchester Hospital . I spent hours pacing the living room, feeling very guilty and ‘phoning the ward every ten minutes.

After finally seeing Toby for just 15 minutes (hells bells was he ugly) he was taken off to Special Care as he was having trouble breathing. They were also concerned about his earlobes, which were rounded and creased, saying that such an appearance was a pointer to ‘internal problems’.  The unit discovered a heart murmur, came up with some reasons, decided to wait and see if things improved, but after 3 days transferred Toby to Southampton General Paediatric Intensive Care Unit (PICU), 80 miles away. Cue first round of tears.

They immediately evacuated him, as he hadn’t poohed during his stay at Dorchester . This eased the heart murmur, as it appeared that his belly was so distended it interfered with his lungs, but they discovered that he had a pulmonary stenosis, which is the thickening of the wall of the last valve out of the heart. Initially this was terrifying, our little lad needed a ‘procedure’, but things soon got worse. The medical kit surrounding him, which I called the ‘Starship Enterprise’, frightened the hell out of me.  
Toby was quickly diagnosed as having Hirschsprungs disease and once they realised that he couldn’t go home to be washed out every day by visiting nurses, they decided that he would need surgery very soon as infection would set in. Sure enough, within days Toby had a ileostomy, proving that the degeneration of his colon was very bad, which will lead eventually to a full removal of the colon. This will make further bowel function more difficult, as a pull through of the ileum will leave him unable to absorb fluid properly (that’s what the Colon does).

Waiting for him to come up from theatre was – up till then -  probably the worst 3 hours of my life. Seeing him on a respirator, sticky plasters holding the tube in his mouth, broke my heart and I had to leave the ward. I cried for him, for me and Tracey and because my little lad wasn’t ‘right’. We stayed at the hospital that night sleep was almost impossible and this just compounded my misery.

Things were slow to improve, but he finally got out of PICU and sent across the road, literally, to the children’s high care ward. Things were to get worse again. He developed an infection that would not budge. Toby laid there, barely feeding, tubes sticking out of everywhere. He even had canulas in his head, protected by polystyrene cups to prevent him from pulling the needles out. Another waterworks session in the privacy of the gents up the corridor. Then the medical team did an ultra sound to his head, normal in the ward, which found that he had ‘Absence of Corpus Callosum’ – a section missing from his brain that normally allows the right & left sides to communicate and coordinate. By far the worst day ever. We felt utterly crushed, our boy now brain damaged on top of everything else.

Yet despite the inner panic I felt, I just could not bring myself to hold him. The fact that he wasn’t ‘whole’ along with the mile of cables, just made me want to push him away, I didn’t want him. I railed against the God that I don’t believe in for doing this to us, to Toby. I was furious that the 20 week scan my wife had did not show the ACC – websites we checked that night (which were absolutely terrifying) indicated that the missing section could be seen at the scan.

Just to finish everything off, the Genetics team spoke to us about the possibility of him having Mowat Wilson Syndrome. To be honest, for me this hardly sunk in. They explained that his bobbly ears, the heart defect, Hirschsprungs and the ACC were all pointers to this ‘new’ syndrome. The fact that these were connected offered little help. Again I checked the web, against the advice of the Genetics doctor. After seeing the reports of children in the US and Australia , I could understand him not wanting us to look. Jesus.

The daily drive to Southampton was becoming a real grind. My Mother in Law was still back in Dorset looking after our other two, who I missed terribly and after 7 weeks were obviously becoming upset at our absences. We pressured the hospital to transfer Toby to Dorchester , only 30 minutes from us, which they eventually did. This allowed the M. in L. to go home, for Tracey to visit the hospital during school times and for me to return to work. I actually felt relieved at the return to ‘normality’.

Toby’s care on the ordinary children’s ward was very different to that of the ‘one to one’ nursing at Southampton ; the nurses didn’t know how to deal with his bag; they only popped into see him in his isolation ward and they used a baby monitor. It was not the end of our immediate problems that we hoped for and we became even more desperate to get him home. Toby finally came home after 9 weeks, with a naso-gastric tube still fitted, as he was not able to suck on a bottle. He never regained the energy to feed from Tracey once the NG tube stopped him feeding by himself.

The NG tube was not fun, but at least it let the midnight feeds pass off in a few minutes. I felt so embarrassed about going out with him, in case people saw it, but in mid winter he was so bundled up that you could barely see any of him. Toby enjoyed pulling the bloody thing out, always on a Sunday morning, making a trip back to Dorchester a necessity to get the thing put back. After a month or so, after a lot of hard work by Tracey, Toby went onto a bottle – using a Harborman Teat, and the NG tube came out. So my embarrassment abated.

I was still having trouble adjusting to the fact that he had so many things wrong with him and this was beginning to cause real friction between me and Tracey.   I had a hard enough time adjusting to fatherhood the first time round, as I especially dislike babies. Add this to our current situation with offspring number three and you’ve got a recipe for some upsetting scenes. I spent most waking hours very grumpy, griping and moaning about destroyed sleep, no second income, having a child that may never leave us to live our lives. Things got so bad that Tracey ordered me to get some counselling, which I duly did as I realised that I couldn’t go on in life taking it out on Toby and everyone else to that matter, not without it destroying my marriage. Where Tracey has the ability to make the best of a bad lot, I’m not so objective and mixing with my fears for Toby’s future were my concerns about my - our lives as a married couple. This I have still not come to terms with and I’m not sure I will.  
One of the items discussed in the counselling sessions is my constant worrying about the future - who will look after Toby when I’m gone, what if we die early. Then there’s the fear that we will never afford a bigger house (we live in a modern rabbit hutch and I hate it), Tracey not working full time again and her pension suffering, having an ‘embarrassing’ child that I’ll feel ashamed of when we go out. It goes on.

The counselling has not come up with any answers, the lady I spoke to never came up with any ideas, it was all just me pouring everything out. But that was the thing, because even speaking to my life long friend never really let me get everything off my chest without fear of being judged a complete bastard. So I’ve bottled up all my feelings, which only served to turn me into an even grumpier old git than before.

By simply letting everything out, without keeping anything in, allowed the decks to be cleared. It kind of rebooted my brain and let me see the situation more clearly. I realised the future is going to hit us no matter what. I can either face it along side a wonderful wife, or let it drag me under. I have three kids, all of them a real character – it’s just that one is not going to follow the same route as the other two. He is going to need my help and support. That’s what being a Dad is all about. Yes, I’m damned disappointed, but there is nothing I can do. My shame is for me to deal with, not to project onto him.

The focus of the counselling was to relax my need to control all situations, to let Toby set the pace. I had to admit that I find him embarrassing, I will want to hide him away, but that this will only make him worse. If he’s going to integrate, I have to put my own feeling aside, for his sake.

I haven’t yet begun to think about the answers to the ‘not having a life’ thing. I love my kids with every fibre in my body, but we have given up a lot for them – don’t we all – and the future will mean even more sacrifice – but I must admit I can’t wait to start doing things that I want to do, without compromising for them. Like not going on ‘family’ holidays (which means keeping them occupied so we can get some peace for a few hours). I miss having a quiet meal with the Mrs. I have grown to despise ‘family’ restaurants where I have to sit there watching everyone’s kids charging around the place, making a racket.

So I am working on ‘putting aside the things I want to do’ – you never know, they might happen, one day. I have got over the shame of creating a child that has ‘learning difficulties’ – Christ how over used is that phrase these days. Everything else will come in time.

Toby is coming on. He’s nearly 10 months old now, delayed of course, but he’s trying. He has more support staff than Tony Blair, with speech therapists, play therapists, physiotherapist and a guy who massages his head, so on and so on. He’s putting on weight nicely and babbles and laughs like a loony when the mood takes him. He can’t sit up properly yet, but that’s as much to do with the muscular damage after the ileostomy, than having poor control.

He’s had the Pulmonary Stenosis worked on, the procedure went well and hopefully it won’t need doing again, at least for a while. He had a chronic gastric bug when he came out of hospital and it took weeks to get him back on track, but he’s doing well.  

Finally …  

I would like to dedicate this directionless rambling to an awe inspiring woman. My wife. Despite constant upset, ruined sleep, hard work, ceaseless vigilance, a moody and moaning husband, two other demanding children and no money, Tracey has been a rock. With only a couple of incidents of loosing her cool, Tracey has remained overtly upbeat, making the best of our situation and running our home. All the time being loving and giving, with time for everyone.  

She has been a role model, companion, advisor and support to me when I have been less than open for her. Despite my ingrained feelings of duty, I could never be as supportive and selfless as her. Tracey has worked so hard to give Toby a real chance to develop as best he can. Any improvements in him have been down to her own character and never say die spirit.

I am truly honoured to have her as my wife and the mother of my children. I can only hope that you guys out there have your own version of Tracey at home.  

Good luck to you all. Best wishes,  

Steve Page

 
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