By word of mouth

June 4, 2015

We have shared Sue’s story here in its entirety along with photos she was kind enough to provide. If you would like to share your story, head over to our Stories page. To talk to other adults with a cleft, check out our Peer Contacts.

This is a story of how hard it is to live with a speech defect. When a child is born with a hare lip and cleft palate the parents are told by the doctors that it can be repaired, but I wonder how many parents realise the number of years the child will have to undergo these surgical procedures, and how in the end some children will still have trouble. I expect today things have greatly improved, maybe the parents are told more and they learn through scans if there is a problem before the baby is born. Most children today are operated before they learn to talk, a lot younger than I was.

My story began in 1938, at that time my parents and five year old brother Michael were living in a small village of Sutton Poyntz which was just outside of Weymouth, When I was born with a cleft lip and palate, my parents were horrified at the sight. Then, it was not like today where there are pictures of children born with a cleft in the papers. Of course in those days there were no such things as scans, so it came as a complete shock to them. I wonder if parents are offered counselling today.

My mother told me how hard it was to feed me, as I couldn’t suck, so she used to give me milk on a teaspoon. The first operation to start the repair was at Weymouth and District Hospital when I was three months old. They only stitched up part of the lip leaving a split, they told Mum it was to allow me to smile. I was also born with a tiny tooth growing in the front of my gum where the cleft was, it was twisted sideways.

The palate was repaired when I was nearly three years old, apparently I cried for a whole week before they could operate, my mother was never allowed to visit, she could only watch me through a window. How different things are today! I can still remember certain things, the white cot and a nurse getting cross because I wouldn’t sit down so she smacked me. The hospital was bombed whilst I was in there, the only way my mother could get news was by going to the local water works where they let her use the telephone. Arriving home I was very poorly with measles, had severe ear ache, and terrified of everything. For years after when I was growing up I was frightened of the dark and used to call out at night for my mum.

There was no national health service in those days, I would like to know if my parents had to pay for the operations, they were quite poor. I wished I had asked them when they were alive.

I cannot recall how I became aware that I was different from other children, in our small village none of the children ever said anything, and I thought I spoke the same as everyone else, you cannot hear how you sound. It wasn’t until I met another girl who lived at the other end of the village who had the same issue that I realised how I sounded to other people, I had a job to understand what she was saying. All my life people have been mixing us up, calling me by her name and I suppose it is the same for her. Another thing I have wondered since becoming an adult is if my brother Michael was bullied because of me, I know that boys of the village used to pick on him at times.

Sometimes when eating or drinking, food would come down my nose, and if I was sick that was worse, as most of the vomit came down also but a lot used to stick at the back of my throat and up my nose for quite a while. I still have that problem sometimes today, seventy six years on, though not quite as bad. Another problem I have which started when I was about twenty three, having my teeth treated, the instruments became more modern as time went on and I do not know the proper name for the tool that sucks up all the bits and water, but having it in my mouth continuously takes the air out of my lungs. My old dentist discovered this when I started to panic because I couldn’t breathe. My new dentist of a few months could not grasp this at first and she told me to breathe through my nose, not realising that the air is still being sucked out before reaching my lungs. So now she just puts the tool in for a moment and that works alright.

My Father went to war in 1939 and didn’t come home again until 1945 so I didn’t remember him for the first few years. When he went Mum had a photograph of Michael and myself for him to take when he went away but he cut me off, still not accepting how I was. I didn’t find that out until after he died. But I still have all the post cards he sent home and when I was about to start school I noticed he told my brother to take care of me so he must have known there was to be a battle ahead.

We didn’t see much of the war, only hearing the aeroplanes going overhead at night and mum putting us into the Morrison Shelter which was an iron “table” situated in the living room, she used to put us under, it had wire mesh all around the sides and she always put blankets there and took a flask of hot milk to bed so we were ready if the sirens sounded.

The biggest excitement for all of the children was when the American soldiers arrived, they surrounded the village putting up tents and “Nissen” huts in the fields. The favourite place for us was their “cook house” we had never seen such food, they used to put jars of sweets outside for us to help ourselves. Then suddenly they were gone, we were too young to realise where they went or why.

My father came home from the war when I was seven years old, although he didn’t want me when I was young he never showed me that he didn’t, we grew very close as I grew up and he was very supportive when I was being bullied, I loved him dearly. We moved out of the rented cottage in the centre of the village to half a mile up the hill on to the outskirts in 1947. My father and some of the local men just before the war started, got together and built their own houses, labouring for each other, that was a rare event in those days, not many people owned their own homes. Our house was just finished as war broke out but my parents weren’t allowed to move in as the government took control of all empty houses to help with the people who were bombed out.

Life at the village school was fine, it wasn’t until Secondary School that my trouble started. Of course there were children from all over Weymouth there. Name calling soon started, “Slit Lip” was the favourite, and “you talk like a man in a coal house” one girl told me. That day I hid in the toilets refusing to go into the class but some girls talked me into it, I was still crying but the teacher only said “something has upset Susan” and carried on teaching. The best thing for me to do was to say nothing because if I spoke it made everything worse. The thing that really got to me the fact that I couldn’t answer back. I would never speak in class or volunteer to answer questions, even if I knew the answers, because I just couldn’t. Sometime I would wish that I couldn’t walk or was in a wheelchair so at least I could talk. Also I had the stupid idea that I had done something wrong in a former life so that was why things were as they were, another thing I wished I could have lessons to play a musical instrument, or ballet dance anything that didn’t require speech, but of course there was nothing like that in the village. Even at that age I thought that if a child of mine had a speech problem I would let them have a hobby if they wanted to that didn’t require speech.

I don’t want you to think that my childhood was unhappy, we had a lovely time. In the village, there was a gang of us and we used to spend time in the fields all around, taking a tent, and food, going to the beach, climbing trees, playing in the local copse, in fact I often think we had a happier childhood than our grandchildren as we had the freedom to run about.

I loved my Mum, she was very good to me, but she would often moan that my hair didn’t have curls, (neither she nor Dad did, so how did she think I would?) so my first perm was when I was twelve. Also my feet were too big, size seven against her five, so I grew up apologising for the size of my feet, and my straight hair. I don’t think she realised that these little criticisms used to undermine my confidence. Dad used to say was I round shouldered, he didn’t catch on that I walked with my head down so people couldn’t see my face, and why even today I still hate my photograph being taken, always trying to make sure the pictures are taken at a distance.

At the age of nearly fourteen years old I passed the entrance exam to go to the Technical College to do a commercial course, another ordeal!! Children came from all over South Dorset we had never met one another before. The very first week, the English teacher asked us to go to the back of the class, one at a time to read out loud, the waiting for my turn to come was dreadful, the humiliation still brings tears to my eyes today, the giggles came loud and clear when I started to read, but the teacher must have been embarrassed because she never asked anyone else to do it.

I was bullied terribly at the college, a local girl who I knew very well got all the others in the class to stop talking to me, it was an awful time, in the end I met up with someone from my secondary school and we used to walk around together, things got better after that, I shall be internally grateful to her, we still keep in touch today. Another incident stands out in my mind, I was about fifteen then, on top of a double decker bus and a local boy of the same age suddenly started to mimic my speaking very loudly in front of all the passengers, suddenly I snapped and slapped him hard across his face, at least he stopped but never spoke to me again.

Every summer a travelling fair used to come to Bowleaze Cove our local beach, as children we used to spend a lot of time there during the school holidays, the Fair ground people were a local family based in Weymouth and we got to know them very well. One day one of the ladies asked me if I would mind the swinging boats for her, and that was the start of me having a bit of confidence in myself. I had to talk to the holiday makers to tell them the price, and when their time was up, saying only what was necessary, but I really enjoyed the feeling that I was doing something useful and getting paid for it. For the next two summers I helped out, even went travelling with them during the school holidays for a while, I was surprised that my father let me go with them but it was the best thing to happen to me. I used to forget about myself when running the dart stall, and call out for customers to “come and have a go”. After that summer I left college, having certificates in typing, shorthand, and book keeping, I was so happy to be leaving all schools behind me, when they say “school days are the happiest days of your life” I always think not for everyone!!!

It was through my father that I had plastic surgery to improve everything, at the age of sixteen he asked the local Doctor if anything could be done to help, so instead of looking for a job I began my journey of operations. They took place at Odstock Hospital, Salisbury, Dorset Ward. I have never been so scared at going, the only time I had been away from home was to Guide Camp.

We were in a ward of 27 beds, run by a very strict sister whose desk was at the top of the room, beds were not to be sat on, on Doctor’s rounds all patients had to sit on the stool provided at the bottom of their beds. Admittance was usually on a Wednesday, photographs taken on Thursday, operations on Friday. The first was on my lip, the day after it was swollen terribly, but not very painful. Usually you stayed in hospital for about a week or ten days. I remember going into the bathroom after about four days and seeing the shape of a normal lip appearing through the swelling. I was thrilled!! On leaving the hospital I was told to rub cold cream into the wound to help the swelling to go down.

The second operation, two months later was on the palate, as far as I could make out they took some of the roof of my mouth and stitched it into the back of my throat. There was a pad of gauze stitched to the roof of my mouth. The pain was immense, the ward was so busy that even though the nurses promised to bring pain killers they never arrived. I kept thinking just put up with the pain because you will be able to speak properly when you go home, how wrong was I.

Nobody explained that because I hadn’t had the operation before learning to talk, that talking would require practising certain words to learn how to use the different muscles. I had speech therapy and they recorded how I sounded, every day I had to practice different sounds. This went on for quite a few months, but I never quite learned to talk properly though my parents told me I sounded a lot better than I used to. I did notice looking in a mirror when I was home that I had a palatine uvula (had to look that up!!) hanging at the back of my throat, instead of a large round hole which used to be there. About nine months after this I had the second operation on my lip as the swelling hadn’t quite gone down so they made it smaller. Whilst in hospital something that really made me angry was a lady with blonde hair in a bun, lots of make up on and bright red lipstick wearing a white coat, whom I had never seen before, was walking around the ward carrying a clip board with a group of students, looking across at me with my swollen lip said to them “of course that is only cosmetic” as if it was a face lift or something done for beauty, I felt so angry if I had had the courage I would have gone across to her and asked if she would like to have been born as I was.

Another thing that happened, I was given a two hour long intelligence test which I found very easy, at a later appointment the surgeon told my mother that she had a very intelligent daughter, apparently it was to see if the deformity would hold me back in later life.

When the lip had healed I started to look for a job, it had to be in an office as I could type and do shorthand. Luckily I found a job in a Builder’s Merchants, glass department, I dreaded the interview but nobody said anything about my speech, the job included answering the telephone as well as clerical work. Certain words were a bit difficult, glass thickness is described in “ounces” which I found difficult to say, but working there I was very happy. I was still seeing the plastic surgeon and it was suggested that they try to make my nose a better shape, and lift the end where it dipped on one side. I must admit I looked quite funny, with two black eyes, white straws sticking out of my nostrils held together with a safety pin on the ends, but it did improve the shape of my nose. Whilst all this was going on as well as my office job I had lot of little evening jobs, in the village, working in a corner shop, and helping out with refreshments at the local dance hall, so I still had to meet people, but used to say very little especially to children as the fear that they would laugh was always there.

Now all the operations were complete I decided to have a photograph taken by a professional photographer, but another shock awaited. I heard him say something about eyes, but took no notice, when the photos arrived I could that my right eye was pointed outwards, I knew that I had a lazy eye, that was discovered when I was about twelve, but never realised that it looked to the right all the time. Looking back now I can see the funny side of it but at the time I was very upset, I thought God was punishing me for being vain. For a long time afterwards I wore tinted glasses but later on went privately to have it straightened, it was better but never perfect.

I met my husband at work, we worked together for about four years before going out together, saving hard we managed to buy a plot of land in the same road as my parents, which acted as a deposit for a mortgage, we designed a bungalow and it was built just before we were married, in the village church, where my father and mother had before us and in the future my daughter too. After the wedding I worked in the local Co-op in the village. Then I fell pregnant, it was 1962, the baby was due on the 27th of December, compared with today, there were no scans, not even a blood test for the first baby, the birth was to be a home delivery as was quite common in those days. If you know anything about that time it was the worst winter for years. On the 27th Dec the day the baby was due the snow started to fall, and didn’t stop. No cars could get up the road, we lived on a steep hill, the snow was so deep that five people died buried in their car half a mile from where we lived. Cold, it was so cold, condensation froze on the inside of our windows, our bungalow had no central heating, or double glazing at that time. The baby didn’t arrive, days past, I was told not to go out in case I fell, the midwife paid a visit on about the 5th January, 63 she said that the baby would come on full moon, and she was right, on Thursday the 10th January, with the Midwife carrying all the equipment up the road and the Doctor with heavy duty socks over his boots to stop him slipping, my daughter was born. The first thing he did was to shine a torch inside her mouth, but she was fine. It was such a relief. It was March before I could take her out even then there was still snow on the edges of the road.

One thing I had done at about that time was a crown put on the tiny tooth which I had been born with, wearing a brace to make it grow straight for a while then the crown added, it did improve my smile immensely.

When my daughter was fifteen months old I worked in the local fish and chip shop in the evenings after my husband came home from work, we served mostly holiday makers occasionally I would get tormented about my speech, mainly from children. So again I just kept quiet and let my friend who was working with me do the talking. The following year my son was born at home, he too was fine, I felt so lucky.

My daughter spoke really well and very early but my son didn’t speak until he was three, my mother said that he sounded as if he was copying my speech, (that used to make me feel guilty) but as he grew his speech became normal. I loved having children especially when they were small, there was no playgroup in the village at that time so we had our children to ourselves until they were about four and a half.

Just after the children started school my husband got a new job, he was made company director of a local glass firm, but it was owned by a larger company who had branches all over England. This meant us having a company car and being much better off than we were. My problem was going to Bristol and other places to meet with the other directors and their wives two or three times a year. I found this very stressful, the men of course knew each other, but the wives did not so we had to get to know each other. I was so shy, and dreaded each of these meetings the stress never got any better as the years past. I felt my husband never understood how much of an ordeal I found them. I used to catch colds from the children so easily which then led to sinus infections, which didn’t help with speech, also I was beginning to lose my hearing on the left hand side so when we went to dinner dances, it was very hard to hear anyone on that side of me, especially if music was playing. We went to America twice with the firm, but I didn’t go on the third trip as I wasn’t well and was taken to hospital for a blood transfusion whilst my husband was there.

We joined the P.T.A. of the school, went to all of the meetings, there again I would never have had the courage to stand up and offer an opinion, mind you nor would my husband either!

Again at this time I made friends with two mothers in our road, Barbara and Claire, they made such a difference to my life. We joined the local country dance group, and had such fun. Then we used to go out for days during the school holidays taking all of our children with us, nine in all. Later we three used to go to London for a weekend together once a year, shopping and seeing a couple of shows, we were lucky our husbands used to look after the children. The two of them boosted my confidence no end. Claire being Irish could get away with saying anything. My hearing had deteriorated a lot by then so I saw a specialist he recommended a stapedectomy operation, saying it had a three percent chance of going wrong, After the operation I lost my balance and kept walking into walls, so they operated again but this time left me with tinitus so loud like a lawn mower working in my head, I thought I was going mad, and got very depressed. My doctor was very kind and used to talk to me privately, he asked if I had had a happy childhood, which in some ways I had, but I said without thinking that I never liked going away from home, and that I always felt safe there, which I hadn’t realised before and to this day I worry about going away, I never feel very confident about how I look, but when we get to our destination I really enjoy it. For the last few years we are lucky our daughter and Son in Law take us with them otherwise I don’t think we would go away at all.

After my husband had his new job, I worked part time for my father who had his own car body repair works in the village, taking care of the books and wages. My husband bought me a second hand knitting machine, it didn’t take long for me to learn how to work it. I had always loved making things with my hands. That machine led to the latest machine and I was asked by the shop owner who sold it to me if I would like to teach people in their own homes as they were entitled to four hours free tuition if they bought a new machine. My husband used to take me to all of the houses as I couldn’t drive then and it worked out very well. One of the ladies I taught became a real friend, she was a farmer’s wife and full of life, it was her idea that we got together to make jumpers to sell at craft fairs, we did this, called ourselves “Variety knits” and had a wonderful time travelling around in her car loaded up with all our tables, rails, jumpers, dressed dolls, teddy bears dressed as footballers, shoe bags hats etc. we did this for about ten years. Meanwhile I was involved with the scouts and guides groups in the village, helping to organise jumble sales and other money raising events.

The children left school, my daughter passed her driving test, so I thought if she can do it so can I. At that time I was still under the specialist about my ears, I had had a third operation by then, they sealed off the “Window” was how they put it, so there was no hearing on the left side at all, only the tinnitus which I learned to live with by having the radio on or television whenever I was in the house and never drinking alcohol!!!! The hospital offered me a hearing aid for my right ear as the hearing was deteriorating there, so I learned to drive, passed first time though I won’t tell you how many lessons it took. I finished up with a lovely mini metro car, but I never really liked driving only did it for about ten years.

The years passed by both children got married then the grandchildren started to arrive, no one tells you what joy they bring. A new lease of life, my daughter had three, two boys and a girl, and my son two, one of each kind, and they were all perfect. We were so lucky that they all lived not too far away so we saw lots of them. One ordeal I found was the filming of the christenings, I didn’t realise that the camera recorded people speaking as well as taking the pictures, and got caught out once, so I used to keep my eye on where the filming was taking place so as not to be heard, as hearing myself on a tape recorder I find very upsetting.

It was about this time that an incident happened, I do hope that I am not being disloyal to my Mother by writing this as she had looked after me very well when I was young, she had just began to show signs of memory loss, (my father had died several years earlier) it was a Sunday afternoon and all the family were at our house for tea, the five grandchildren were out in the garden playing and the adults were in the lounge, I’m not sure how the subject came up, but we were talking about babies and my Mother suddenly says that “its alright as long as they have nothing wrong with them” everyone stopped talking and looked across at me I was so embarrassed, I could have cried. I never liked her to come up to our house as I always felt “normal” there. When she died she wrote me a lovely letter, I only wish she had told me when she was alive that she loved me. As a family my situation had never been discussed, the children grew up accepting me as I was, though they must have had worries before their children were born.

The years rolled by and the grandchildren before we knew it were teenagers, some went to university, others went travelling, before settling down. Meanwhile I had a different string to my bow, talking one day to a man who had started up a local magazine he wanted to know about the history of the village, and then ask me if I could write. So I began by writing articles of life in the village when I was a child, to be published in the monthly magazine, these were very well received and after about a year, a book was published with all the articles and pictures in it. It sold very well, and the Council purchased some for the local library. I continued to write more articles for the magazine about the history of Weymouth as it was when I was young and now have enough for another book.

As well as my hearing problems I developed Osteoporosis, my first spine fracture was when I was forty eight years old, the pain was terrible, but with fractures I got to learn that the first six weeks are the worst then after about three months the pain subsides. Now I have had seven fractures in all and have a very bad posture with a curved back, under different hospitals I have had many different treatments over the years, the best is an infusion Alcasta, which I now receive and lasts a year, the pain level is very good now almost disappeared. This how I came to write this article, with the treatment I receive you must have specialist dental treatment. My dentist could not treat me with an ulcer that wouldn’t heal up and so wrote to the local hospital, I also had terrible toothache and a job to eat, my daughter rang them and was told it was a four month waiting period, so she booked me privately to see Professor llankovan, he knew at once what was wrong and I went to his clinic for treatment. Whilst seeing him he asked if my daughter and I would mind going to Poole hospital to take part for a day helping in the final examination for the fellowship of Royal College of Surgeons in Oral and Maxillofacial surgery, he thought it would be good for them to see someone with a cleft palate operated on from long ago to compare how it is done today. This meant pretending to be a patient and answering all their questions. At the end of the day a surgeon, Mr. Mark Devlin, a very kind man who we had been with most of the day, said that it would be good for surgeons to hear about the psychological side of a how a patient feels, so here we are.

About twenty years ago the village formed a society to watch over planning and how the village is run. Three years ago they decided to do a history of it with local people (of which there are very few left who have been born here) recording their stories on a C.D. and lots of pictures of the olden days. They showed the exhibition in the Dorchester Museum, and it was very good. I met one of the organisers she said that they hadn’t asked me to contribute as they thought I wouldn’t have wanted to. To be fair I wouldn’t as it would mean me being recorded but it would have been nice to have been asked.

Two years ago I began to have difficulty making people understand certain words, especially on the telephone. My name caused problems, “Dodge” and where we live “Preston” having to repeat them several times. I always finish up apologising for the trouble I’m causing. This time I know I am not saying the words properly, where as when I was young I didn’t. So when there is somebody with me I ask them to say my name and address for me, I have no idea what has caused this deterioration but the repair at the back of my throat looks as if it has shrunk (if that is possible).

I wonder how children today cope with tormenting, I could always go home and know that I was “safe” there, they couldn’t get at me, but with social media such as Facebook and Twitter today’s children don’t have that escape.

There is no history of hare lips or cleft palates in our family as far back as my Great Grandparents on either side, my mother had a baby in July 1937, unfortunately he died after two days. As my father was going to war they decided to have another baby straight away and I was born July 1938, and I have always wondered if they didn’t give mum a chance to recover from the previous birth.

Looking back over the years I realise that I depended a lot on my friends and family to help me with speaking, letting them do it for me, I have come to accept how I am, and know my limitations, for instance I could never go on television or give a speech, but I think that in this life you have to make the best of what you have got. I know that there are people who are a million times worse off than me. I have a lovely home, in the village, only half a mile from the house I was born in having never moved from there, Husband, Children and Grandchildren, who are very supportive, I love very much, and have had a good life doing all sorts of various things. Sometimes I just wonder what it would have been like to have been born “normal”.