My name is Paul, I have a cleft lip and palate. Here’s my story.
I’m a grown adult now and only just this side of 50. So my story starts at my birth in 1969. My parents have both died, so I can’t confirm this, but I believe they saw no way of diagnosing cleft at this time. When I was born my double cleft lip and palate was a surprise to everyone. I remember my Grandad quoting our doctor at the time as stating my cleft was “the worst he’s ever seen”.
Even if I could remember them all, I won’t list all the operations and procedures I had – about 15 in total I believe. In any case, I know treatment paths are very different nowadays. I was under the expert care of plastic surgeon Mr Saunders at Mount Vernon Hospital in Northwood Middlesex, a leafy outer suburb of London. I seem to remember being told my first procedure was when I was a few weeks old. As a baby I used to have an artificial palate in my mouth, with a safety retrieval cord hanging out in case it blocked my throat. My mum told me that people used to spot this cord and, alarmed thinking I might choke, point it out to her in case she hadn’t noticed.
As a young child I don’t remember ever thinking that I was any different to anyone else. I simply didn’t notice. I was just who I was. Children are generally very accepting. The first time I remember realising I was different was when a nasty girl at school referred to my “squashed nose”. I was about 9. I remember coming home and arranging bathroom mirrors so I could see my profile. I was quite alarmed when I saw it.
Clearly that event made an impression on me (why else would I be able to recall it 40 years later), but my appearance has not bothered me long term and I can’t recall many other references to my appearance apart from a few genuine questions about why my lip was like that – and I am quite happy to answer those.
My indifference to my cleft is perhaps most clearly demonstrated by the fact that I was offered jaw reconstruction surgery in my late teens which I declined. The aim of this was to improve my profile. The idea, as I understand it, was to break my jaw, take a bit out and reset it a little further back so it aligned closer to my top lip. The operation was explained and the long aftercare too – wearing a full face brace for weeks, eating only soup. It just seemed like a whole lot of trouble to go to for something which didn’t really bother me anyway.
So that was the end of my surgery which had included a “nose job” in my early teens and inserting crowns for some teeth just before university. I also had a bone graft and quite a bit of speech therapy as a youngster.
Now as an adult I can go a couple of years without even giving my cleft a passing thought. Yes, it is a part of who I am – but only a small part. I am a person with a cleft lip. But I am also a person with two amazing children. I am also a person who cycles, who plays badminton, who develops websites, who is very tall, who is an only child, who sings in a choir. No one thing defines me.
I have recently become divorced and this sparked me into starting some new activities and reflecting back on some old things. I am also a great believer in doing things out of your comfort zone every now and then. When I found out about a 1-day CLAPA adult conference in London in 2017 I went along. I spent more time that day meeting other cleft adults, talking about our experiences, hearing about cleft procedures and thinking about my cleft than I had done in the whole of my adult life put together. It was quite a day! I learned lots and met some great people.
My bit of advice for cleft youngsters? If you’re fed up experiencing procedures now, don’t focus on the present, focus on the bigger picture. A few days or weeks of discomfort are soon forgotten as you grow older. And always remember to focus on your abilities and strengths. Your cleft does not define you.
And always make the most of every opportunity that comes your way. As the saying goes – life is not a dress rehearsal.