I was born in 1947 with a cleft palate - and, hence, my medical history covers my entire life. At the time of my birth the NHS was not yet in existence and remedial surgery was an unaffordable option for my parents. Consequently, the palatal repair was not carried out until after my third birthday.
The function of the palate is to separate the nasal and oral air/food passages. If it is deficient, food and fluids regurgitate through the nose and speech has a very nasal quality which can often make it virtually unintelligible. Even the simple task of feeding me as a baby was challenging and hugely stressful for my parents.
In 1950 I finally received much needed surgery...performed by a general surgeon whose main interest was in stomach surgery! Whether the outcome of my operation was the result of a lack of expertise, or whether it would have been the same regardless of who operated, I shall never know, but the result was certainly not ideal. It took years for me to master drinking without fluid coming straight down my nose - and accidents do still happen.
The main hurdle though was the effect that the cleft and the scarring had on my speech
which required speech therapy twice a week, every week, for three years until I was six. Orthodontic treatment was then needed from the ages of 9 – 11.
Throughout primary school and prep. school there were no comments from my peers in respect of my speech. It was then a shock to be confronted at secondary school by those who derived some kind of pleasure from imitating the sound that I made. When I became a prefect the problem became worse and I found that I had no defence against the main offenders who tended to be some years younger than me.
Even today I do get fed up with saying ‘Hello’ to people only for them to reply ‘Fine thank you’. When that sort of thing happens - as it does regularly - the sensible thing would be to speak up and project my voice better, but that is difficult and the instinctive response is to disappear further into my shell and mumble - which doesn’t help. From time to time I have just retreated from shops, or wherever, when I could not get them to understand what I was asking for. At other times, particularly in restaurants, my wife takes over. It has not been unknown for the wrong food to arrive otherwise. There is no problem with people whom I know, although on occasions their blank looks tell me that they have not understood what I have just said. Unfortunately, people are too polite to say so which then leads to an awkward hiatus in conversation!
With family, friends and previously my work colleagues my voice is not a problem... because they came to know me rather than just a voice. Whether that is because it is easier for all of us for them not to mention anything or because it doesn’t occur to them I don’t know.
It may be thought that communication problems would be eased in retirement and that was what I had anticipated, but I was wrong. One of the problems with getting older is insomnia. My thoughts are full of unpleasant voice-associated memories, particularly at night but also frequently during the day, and every day. It may be thought that time would have assuaged these thoughts but I am afraid that the opposite has proved to be the case. It has been a war of attrition and my protective wall has been gradually eroded away. Adversity doesn’t always make people stronger, they just pretend that it has as a part of the defence mechanism. At least I can now be content within my own circle of friends and family but all my life there has been an extrovert trying to get out although unable to do so and that has frustrated me a lot.
A friend of mine underwent extensive surgery for oral cancer resulting in major functional handicaps in his speech and swallowing, but he felt that the external scarring served to explain those functional problems. Just because there is no external scarring in my case and those of other cleft palate patients not accompanied by a cleft lip, that does not mean that there isn’t a problem and it is crucial for people to understand that. This is the case not just for cleft patients, but after many surgical operations.
In cleft cases, as in so many others, the problems do not stop when the surgery has finished. I am delighted to have been invited to be an Ambassador for the Scar Free Foundation. The work that they do, and that of other affiliated organisations (such as the Cleft Collective based at Bristol University), is of incalculable value and benefit.