I was operated on by a wonderful surgeon at Hammersmith Hospital, Mr Franklin but I know that my parents did not expect me to survive. After all, it must have seemed unlikely.
I was in hospital for at least a couple of months and was eventually allowed to go home. Mr Franklin kept in touch with me for many years, I guess because I was the first. I last saw him when I was in my mid-20s.
I went to Hammersmith Hospital regularly for check-ups as a child and when I was about 11 years old, I was invited to appear before a large gathering of doctors in a lecture theatre. I just had to walk in and prove that I was alive and well!
I do have some health issues which I now realise are typical of someone who has had an OA repair. As a child, I did not have any serious issues, apart from some difficulty swallowing foods such as bread and I have for many years cleared my throat and coughed a lot, especially after eating
However, as I became older, around 40 years of age, I developed asthma and breathing difficulties with a tendency to develop a chest infection even after a straightforward cold.
Like many other OA/ TOFs, I feel self-conscious as I cough a lot, especially outside in cold air. Acid reflux is another health issue typical of OA/TOFs which I have developed and now take medication for.
I was sent for an endoscopy several years ago after I had the sensation of something being stuck in my throat. The technician carrying out the procedure could not believe how wiggly my oesophagus is, but neither he nor the supervising doctor had heard of OA. They told me I have a hiatus hernia, but I am now wondering if that was scar tissue resulting from the surgery.
Another serous health issue I have is back pain, as I was born with two vertebrae between my shoulders fused together. This was only discovered when I had a body scan during treatment for another illness just over ten years ago.
When I was a teenager, I fell in love with France and all things French (even the pop music), so when I left school, I trained for two years as a bilingual secretary at the French Institute in London. I gained a great grounding in French as we were taught all day during the two-year course by native French teachers always speaking in French. I subsequently worked as a secretary at the Council of Europe in Strasbourg, France.
When I returned to England, I decided to study for a degree and later qualified as a lecturer for teaching teenagers and adults in the further education sector. I worked for many years in inner city colleges in South London and found I absolutely loved this work. It was challenging at times but certainly never boring.
As my daughter is dyslexic, I wanted to find out more about this specific learning difficulty and trained as a dyslexia assessor and tutor. My last post was as head of dyslexia support at my local college.
Until very recently, I had never come across other people with OA, but I remember very clearly when I first heard about TOFS.
I was idling through the news on my phone and came across an article about a woman who had given birth to a baby with OA and the TOFS charity was mentioned at the end of the article.
Excitement doesn’t come near to describing how I felt.
That moment changed my life and coming across the charity made me feel very emotional and part of a community.