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Emma Wick – Born 5 July 1989

Hello, I’m 23 year old Emma Wick born 5 July 1989. I don’t have a hard time swallowing any more  I still snore but not really excessively. I last had speech therapy at 8 and my speech is perfect, nobody would ever know. I actually work in a call centre so what does that tell you? I am going to do my second degree next year, just saving up a little and I am kind of proud to work there because of my cleft.

Pierre Robin was not treated the way it is today back in 1989. I was in hospital for the first 3 months of my life on the ‘Burston Frame’, This frame was like a cot with a hole for my face to go in, I had to lie face down with my clothes on backwards so the buttons didn’t hurt me (I can’t sleep in pj’s with buttons to this day!), There were loose straps to keep me in place. I think the idea behind it was to make sure my tongue did not fall into my palate and maybe for gravity to help bring my jaw forward.

After 3 months I was allowed to go home with my parents and I slept with a sleep apnoea monitor, luckily the only time it went off was when I managed to wriggle out of it and scared my poor parents half to death.

My first surgery was at 15 months old and was on my hard palate, my quality of life improved a lot after the first surgery. My entire family were always encouraging me to pull tongues as it was supposed to help bring my jaw forward, I’m sure they got some disapproving looks from people when they did this in public.

My second surgery was at 8 and was on my soft palate, I hated it. It was the most horrible experience of my life, mainly because I was vomiting blood which I have later found is a side-effect of anaesthetic for me and anti-sickness drugs have really helped me in my future surgeries. Once healed I had a year of speech therapy and my voice became ‘normal’. I was a tiny child so my peers thought it was ‘cute’ that I had a squeaky voice and were all quite disappointed when my speech therapy was complete.

I had braces for 5 years (13-18) and a permanent brace put on top teeth to keep them in place. My bottom teeth kind of went wonky so I had 6 months of braces last year and a permanent brace put on the bottom. I have had 2 palate repairs as an adult as food keeps on getting stuck at the back of my throat in a small hole in the palate. I thought it was normal and didn’t mention it to anybody until I was about to get discharged and I said ‘I know its probably normal but I just want to double check.

I am awaiting my 5th palate repair now as the 3rd did not work but the 4th actually managed to resolve the problem, but it only lasted for 9 months and then went back to how it was. I think the reason I’m going back for more is that I know what it is like to eat without worrying about getting mince/mash etc stuck. My jaw was still tiny and it did make me extremely unhappy so I had a rhinoplasty 3 weeks ago. They did want to bring both my top and bottom jaw forward to balance out my profile but manipulated an X-Ray and found it would be better and far less painful for them to simply make the nose smaller.  Also had a lot of glue ear but the ENT refused grommets as they could damage my hearing.

I got them at 19 after going to see another ENT and my hearing has improved from ‘Mild hearing loss’ to within the normal range. Grommets have since fallen out and I have not had glue ear since, I was plagued by it. A cleft/Pierre Robin is not a disability; it is just a small hiccup that is easily resolved xxxx