One of This Month's Featured Families!
Born January 30, 1988
Unilateral Cleft Lip and Palate
Hello! For those of you who don’t know me, I’m Emma. I was born in 1988 with a unilateral cleft lip and palate. I am the younger of two children.
Saturday 30th January 1988 at 2.30am was when I first arrived in the world, daughter to Steve and Frances Royston. My brother, James, was three years old at the time. Before I was born, my mum and dad knew very little about cleft lips and palates, mainly because it had never affected them before.
About a minute after I was born, the nurse noticed a problem “Oh, she has a cleft lip!” and from then on, everything was totally different.
My poor old dad was really shocked by the clefts, and was not sure what complications they entailed.
As soon as my dad got home (very late on the evening of my birth) he looked up “cleft lips and palates” in a family doctor book or something. It was then that he knew – or thought – that I would be in and out of hospital all my life.
When I was six days old, Mum and Dad took me on the first of what seems like hundreds of trips to the Queen Victoria Hospital (QVH) in East Grinstead, to the cleft clinic. There we saw the entire cleft team, including Mr Thom, who is still my orthodontist – sixteen years later. When I was at an orthodontics appointment last year, he asked how old I was. I replied “Fifteen,” and he seemed surprised. Honestly! I’m not going to remain a toddler forever, you know!!
The cleft team was really helpful, and provided Mum and Dad with a Haberman feeder. When I was fed with it at home, it worked successfully.
Four months later, I had my first operation at the QVH. I stayed on Peanut Ward, and am now very well acquainted with the ward and one staff member in particular – a nurse called Scott.
Since my birth, I have had twelve operations. Eight have been directly cleft-related, and four have been on my ears. I can remember having the bone graft, in February 1996, and I had to stay in the night before the operation for observation or something. I rather enjoyed it I think, as I had made a friend called David. We watched Honey, I Blew Up The Kid on TV and played games, with dolls and things.
The operation was initially a success, but a few days after I was discharged we had to return, as a stitch had come out, and the grafted bone was visible. I remember that I was pretty distressed by the whole ordeal – I was only eight. The positive bit was that as I was limping because the bone was taken from my leg, I went round the supermarket in a shopping trolley!
In January 1998, something happened that left me feeling totally empty inside. My grandmother, Katy – who was a very heavy smoker – fell ill, and was admitted to hospital. She took a turn for the worst on 21st January, and died peacefully in her sleep the next day. She meant so much to me, and was a huge part of my life. Whenever I had an operation, she would be there with hugs and kisses, making me feel so much better. I’m not a religious person but I do believe in Heaven, and that she is looking down at me and helping me through each operation, smiling and filling me with love. Whenever I feel sad about the fact that she died, I remember all those hilarious Christmases, and how my cousins, brother and I used to carefully balance Christmas crackers and tissue paper on her head (or in her ears…) when she’d fallen asleep in her armchair, and how she’d be annoyed when she woke up!! I can’t think of her without smiling.
Since 2000, I have had five operations. I had the remaining T-tube removed from my left ear (the right one had fallen out three years previously) in our local hospital in August 2000, but it wasn’t a great ordeal for me as I was just a day case. I did have a general anaesthetic though, so I felt really groggy.
In December 2001 I had a lip revision, which I chose to have. I had the operation because I was just fed up of kids at my school poking fun at me and calling me “fishface” and “flatnose” and other pathetic but hurtful names. The operation went smoothly, and I was very pleased with the results – and I could still eat my turkey on Christmas Day!! However, I still got made fun of when
I returned to school in January. Although the scar is nearly invisible unless you know it is there, those kids decided that they didn’t care and continued tormenting me.
April 2002 was the date for my next operation, which was to be a tympanoplasty on my right ear. The surgeon cut open my ear, and took some skin tissue. He grafted it onto the perforation on my eardrum, so I can now hear a lot better. Again, the operation went well but I had to stay in an extra night. This was because I had not regained my balance, and kept being sick. Usually, staying in hospital isn’t a big deal for me, but this time it was because I was fed up of just staying in one bed all the time – I like to move around. In the evening of the second night, the doctor put a tap on my other hand, and gave me anti-sickness drugs or something like that. They worked well, and I was allowed to go home after lunch on the third day. I was so happy – but also bed-bound because I didn’t have much energy.
In April 2003, I had a palate repair, because I still had a fairly large fistula and milk and liquid came down my nose, which caused embarrassment. It also caused amusement when I did it deliberately!
When I went to the cleft clinic I was asked if I wanted the fistula fixed, so I said yes, I did.
I had the operation in late April, but it was strange because my dad wasn’t there. He had just got a new job in London and couldn’t take time off work. It was just me and Mum!
The Queen Victoria Hospital is very old, and the corridors are outside and are pretty cold when you’re only wearing your PJs and you’re on a trolley!
I didn’t get on too well with the anaesthetic, and kept being sick, and was vomiting blood, which was quite distressing. The doctor assured us this was OK, and I was allowed home the day after my operation.
During the operation, a weird ‘blue-tack’ – the only way I can describe it – was put over the repair to protect it. Well, that only lasted three days!!
I still have a small hole, but drink only comes through my nose if I make it. Remind me to never demonstrate my magic trick using fizzy drinks – it makes my nose go weird and I end up sneezing all day!
The latest operation I had was in late September 2003 and it was another tympanoplasty, this time on my left ear. The operation was slightly different because the surgeon didn’t actually need to cut open the ear, he just had to make a cut to get some tissue and he did the rest via the ear canal. I had no problems with my balance this time, and was up and about just a few hours after the operation. I was also very happy that my dad was able to visit me, as this operation was in our local hospital about 20 minutes away from our home. The operation was a great success – so great, in fact, that I once huffed into my mum and dad’s room to tell them to turn the sound down on their TV, when actually they were just talking in their bed!! I was pretty embarrassed…
Since I started secondary school in 1999, I’ve been bullied a lot. At first it was just stupid juvenile name calling like “Fish-face” ,“flat-nose”, “wonky-lips” and “squash-nose”, but since a certain girl started at my school in 2002 it’s been physical. Mainly it was just the usual names, but sometimes she ruffles my hair, pokes my back and pinches my bum. It upsets me when she does that, because I’m a human too – I don’t deserve to be treated so badly. My school is totally useless too – they say they have a ‘non-bullying policy’ but it doesn’t seem to be working too efficiently! Luckily, I leave school in June and I will never have to see those bullies ever again. But before that, I have to endure two whole weeks of GCSE exams – something I dread even more than upcoming surgeries, just minutes before being wheeled to Theatre…
Having a cleft lip and palate has not been entirely negative, though. If it wasn’t for that, I would never have met any of the wonderful, kind people on cA. I’m so very grateful for all the support that everyone has given me, especially my families. My mum, dad and brother have been fantastic throughout my whole life. But now I have another family – you. Thank you to everyone who has been there for me when I needed you most. I really hope that I can help you like you have helped me.
Feature of the Month
Stories of Craniofacial Care and Inspiration
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This cleftAdvocate page was last updated March 25, 2014