Members

[26 Jul 2010]

I was born in 1966 to older parents, with a unilateral cleft lip and palate. I had an excellent lip repair for the time, by Mr Littlewood and superb care from dedicated orthodontist Peter Bush and the team at Liverpool Dental Hospital.

I don't remember much of the early operations, although one story intrigues me. A ‘kind' lady, no one knew who she was, had gone round the baby ward popping Smarties into each child's mouth. Sadly, this ruined the surgery I'd had. My parents say now they should have done something, but in those days the blame/claim culture was a long way off.

School holidays meant an appointment at Liverpool and were usually fine; I learnt, like a lot of children who have medical treatment from an early age, to be stoical and not make a fuss. One incident does remain in my memory: the nasendoscopy I had when I was 10. It was the early days of this sort of endoscopy, and I found the rigid ‘scope extremely unpleasant. True to form - I remember noticing ‘David is a splendid little chap' in my notes - it was only when we were back in the car that the tears came.

After this, I had a pharyngioplasty. No one ever really told me how well this worked; while some school friends would say my speech was better, I heard a rumour that one boy had said he couldn't tell any difference.

School was generally OK, although any bullying did upset me a lot. I am a sensitive person - a mixed blessing at times - and my parents sometimes would go into school after I had a bad time. I asked them a few years ago why they intervened, and was told it was because I was so upset by it.

My coping strategy with bullying was to walk away, as I always felt that trying to retaliate verbally would just give them more ammunition and I never had much physical aggression. This strategy was not so easy in a class which could seem to go on forever while I wished the floor would open. My worst time for bullying was in the sixth form studying for A-levels, when a couple of people decided to hit my ‘crumple zones' regularly and remorselessly. Revenge came on results day, when I got higher grades than I needed, while the potential doctors, not seemingly blessed with much compassion, did not get what they needed.

Music had been an escape mechanism; I learnt the piano from the age of 7, and was gifted, although not prodigiously. I discovered the world of musical theatre (always a form of escape for me) and within a few years had acquired a good knowledge of musicals, also playing the piano for a local theatre group from age 12.

Studying biochemistry at University was something I would not have missed for the world. The unpleasantness had gone and I enjoyed living away from home. At a routine check-up at Liverpool, a new surgeon had appeared on the scene. A Czech with a poor command of English, he didn't waste much time in telling me if I wanted to work in science at a high level my appearance would let me down. None of us felt we could argue as choice hadn't become fashionable in medicine then, so I had a bone graft just before Christmas 1986.

Sadly this broke down as apparently I had destructive bacteria in my nose which I hadn't been swabbed for. The following year I had a ‘tongue flaps' operation; I was told this was done as a last resort for large fistulas. The flaps of tongue are grafted onto the hard palate. This was a traumatic operation, requiring 3 weeks only having liquid food, before returning to have the graft freed.

When I returned to the clinic prior to having the graft freed, the surgeon told me it hadn't worked as well as he would have liked and I was to have it turned round for another 3 weeks. At this point I did show uncharacteristic anger and objected to this course of action; it was a hot summer that year and I had lost weight and didn't feel physically well. He agreed, reluctantly, that he would just free the graft. In the end I was only left with a small fistula at the back. However in some ways this was worse, as previously I had been able to get rid of any stray food, but now it was like a one-way valve so rice etc could venture through the fistula but I couldn't retrieve it.

Years later I tried some plates made by one of Mr Bush's successors at Liverpool, but only wearing these for mealtimes plus other comfort factors meant I chose not to persevere with this.

I did have speech therapy at various times; my mother took me on the 2-mile trip in my pushchair in all weathers, sometimes to no avail as the therapist hadn't turned up and we weren't notified. There was also a large turnover of therapists during my early years.

Many years later (when I was 33) I asked to be referred, and made good progress. A poignant moment was when the therapist told me I could make ‘f' and ‘v' sounds correctly - it as just that I had never been shown how to before.

For reasons that have not, and probably cannot be explained, I had a breakdown shortly after leaving University where I was in the top three of my year but missed getting a First. I did however get a job relatively easily doing Research and Development with a pharmaceutical company. Sadly I did not last long there as the first depression had taken a grip. A few months later I was diagnosed as being bipolar. With hindsight there had perhaps been indications in my final year but nothing to cause concern.

The next few years involved a major evaluation of my definitions of success. Physical problems resulting from an accident took priority. I then worked in a pathology lab, a job I could have done after A-levels, before leaving the NHS to build up my business as a self-employed piano teacher. Voluntary work a few years ago gradually led to paid work with older people, and currently I am deciding whether to move into this full-time.

A couple of years ago after seeing something at the first CLAPA Adults Conference I was encouraged to try for a prosthetic denture. This time I was referred to Manchester Dental Hospital, and am nearing the final stage of having the denture made. I sensed I was an ‘interesting/extreme case' but am happy if I can contribute to a professional's pool of experience.

I did a Changing Faces workshop in 1990, meeting James Partridge which was a privilege. I also made a short documentary for them which was shown on Granada TV in the early 2000s. This was on facial disfigurements, with others being more severe than a cleft. At first I watched the video several times, but then I found it made me self-conscious - seeing oneself in 3D is much different to 2D in a mirror and it was a sobering shock. Like hearing our voice on tape - when it sounds perfect to us inside our heads - it can provoke feelings of acute self-consciousness in me.

I remember Mr Bush at Liverpool mentioning CLAPA back in 1975, and my parents grew plants to sell to raise money for a couple of years. In my early 20s, along with another enthusiast I started ‘Young CLAPA', attempting to have a social group. However the wide geographical spread of a sparse number of interested members meant this group did not continue for long. I remember the surprise I felt when someone from CLAPA gently pointed out to me that just ‘getting a load of cleft kids together in a room' may not be what they wanted, however good the intentions.

However, three of us do meet up a few times a year in Liverpool, more as friends than people with clefts but still an enjoyable way to spend an afternoon.

The internet age provided a great way of ‘filtering' people with similar interests, health issues etc and allowing them to come together. Initially enjoying Left Clip on Yahoo Groups, some strongly-worded raw messages from adults with clefts prompted me and others to start Left Clip 2, which was just for adults with clefts, leaving Left Clip for parents of babies with clefts whom we felt may not appreciate negative images of clefts in adulthood at that point.

This moved to Smartgroups, and I remember spending large amounts of time writing to people, trying to help newer members etc. A difference of opinion with someone made me realise how much time I was spending reading and writing about clefts and I had a break.

However, realising that I have insight and awareness into my cleft means that it is something I reflect on and return to.