Something that makes me unique is my smile and I am going to tell you all about my crooked smile. I have facial palsy which means my facial nerve doesn’t work the way it is supposed to when I smile, or frown and it affects my eye and mouth. My nerve didn’t grow properly when I was developing, and it isn’t long enough. When I was four, I had my first operation in London to try and help this.
I don’t remember a lot about hospital appointments when I was really little, but I have grown up with them just being a part of my life. I had to go to see eye doctors, occupational therapist, physiotherapist, speech and language therapists, nerve doctors and my paediatrician. One thing I do remember is how they never really knew what to do with me, which always resulted in a “let me research a bit about this and talk to others and I will bring you back” approach. This really annoyed me because it meant another day of missing out on doing something good. When I asked my mum why they didn’t know, since they were supposed to be doctors, she would tell me that they have probably never seen facial palsy before. My mum has a big file with lots of print outs that doctors have given her over the years.
Eating has always been an issue for me, ever since I was born. I couldn’t suck a bottle, so I had to get special bottles that were used for babies with cleft palate and when I started eating solid food, I choked all the time. Mum had to keep taking me to the doctors and bugging our health visitor until eventually speech and language therapists came out to the house to watch me eat.
My speech wasn’t very clear as I couldn’t make the b, p, v or f sounds because my lips didn’t fully close, so I had to go to speech therapy too. I also used to get eye infections all the time and so I had my eyes checked every 12 weeks until I was five years old. I think I might hold the record here for the most eye tests ever.
When I was two, I had to get put to sleep to get a scan done to see what my nerves looked like. My mummy wanted me to see a specialist after this but there were none here in Northern Ireland, so I had to wait for my paediatrician to put a case together for the health board to fund treatment outside Northern Ireland. This meant loads more appointments.
London was scary. It was my first time on a plane, but it would be a journey that I would get used to over the six years and I even got to meet some famous people on the plane. The specialist plastic surgeon was a really good doctor. He was able to answer all the questions we had and to give a definite plan on how to move forward to help me. When we came back, all the healthcare people wanted to know how I had got on and so, guess what, more appointments! Mum said I was like a celebrity.
I had my first operation at age four and I was in hospital for a week. Mum calls it our operation-moon as she and dad got married two days before we went. I remember going home. I was so glad, but I was a bit scared too as we had to get the tube and my legs and face were bandaged up so mum and dad had to carry me. In the airport I was in the buggy and I felt silly as I was way too big to be in a buggy.
I had my second operation at age six, just after my brother Charlie was born. It was good because mum was off work and didn’t have to worry about taking leave days. This time I was in London for three weeks and it was really hard. I missed home, and my friends, and I knew I would be off school for longer this time and I would miss all the things I enjoy about it.
One thing I hated was getting up at 5am to go to my follow-up appointments in London. We had to get the first flight from Belfast City airport so it was always a really long and tiring day and my mum was always stressed that we would be late for the appointment as it was two tube rides away from the airport. On one occasion they even cancelled the appointment, but we didn’t get a letter, so we went as planned and there was no doctor to see us when we arrived. I thought it was funny, but I don’t think mum and dad did as they complained to the post office when we got back.
On my second-last appointment the plastic surgeon sent me for physio in London. It was good as the lady knew exactly what I found hard to do, so she didn’t ask a million questions. I had had physio done before, but they didn’t really know what they were doing and always seemed a bit nervous of doing something wrong or they were reading from notes from another hospital for guidance.
When I was six some boys started to tease me about my scars. It wasn’t a good time and I stopped wanting to do things I knew they would be doing. I am a bit nervous about starting high school as I can’t do contact sports and I don’t want anyone to think I’m weird or soft.
My dad says my mum is like a dog with a bone and my granda says it’s a good job she is, or I wouldn’t have got access to the services I did. A lot of people think that facial palsy just affects the way you look but it is so much more, and it can affect people differently. I hope that medical professionals, teachers and coaches can learn about it and learn how to treat it, just like they would for someone with asthma or a sore back.
Jack, 11, Antrim
Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.