Katherine’s Story
On Wednesday 3rd August 1988 I was born to my parents, Nancy and Bill Taylor.
Mum had been in hospital for 2 weeks by this point as the ultrasound scan had showed that the placenta was coming first, so mum had a caesarian section.
I was out of breath and, after an interval because the paediatrician was busy elsewhere, the doctors found my cleft palate and small lower jaw (Pierre Robin Syndrome). My dad was called to the hospital and the doctor explained to him and mum.
I had a large central gap in my soft palate at the back of the roof of my mouth.
A couple of days later I was transferred to Alder Hey Children’s Hospital, where I was put on a frame, face down, to allow my jaw to fall forward. My breathing was monitored. 
I was tube fed for several weeks and had a plate covering the cleft in my palate to stop any liquids going up to the roof of my mouth and into my nose.
I eventually came home midway through October.
My palate operation date came and I went back to hospital at 9 months old.
I have been very lucky with my cleft and only ever needed one operation. I had no operation for my jaw.
From a young age until I was about ten or eleven years old I was under the ENT consultant for my hearing. I had two operations four or five years apart for grommets. At one of those operations I also had four teeth out as my teeth were crowded in both upper and lower jaws.
As I got older I had orthodontic treatment with braces on the upper and lower jaws and veneers for my front two teeth. I was discharged from Alder Hey at the age of twenty-one.
When I was twenty-five, I decided to get my hearing checked as it had not been done for over ten years. I was told that I was nearly fully deaf in my left ear and partly deaf in my right. I didn’t do anything as my family had said that they hadn’t noticed any changes. I wasn’t asking them to repeat over and over again.
Recently I have found hearing harder and so went back to my Genral Practioner and he booked me an appointment to see an Audiologist. I now have a hearing aid for my left ear.
When I sneeze, which is often, I produce a huge volume of yellow nasal discharge and have to make sure I always carry large amount of tissues around with me. I have never had any treatment for this.
I also have intermittent pain in my right temperomandibular joint, not related to opening my jaw.
The family was screened for Stickler Syndrome at Addenbrooke’s Hospital but none of us had it.
When each eye is closed I have nystagmus in the other eye. I have some defect of visual acuity in both eyes which is not correctable by lenses.
My joints are abnormally flexible and I have some joint pain in my fingers and wrists.
