Living with Cleft lip and Palate

Let’s start this off with saying Hi! My name is Lucy. I am Katy’s younger sister. Welcome to Lucy’s corner where I will talk about my life experiences and random stuff.

What is cleft lip and palate?

The NHS definition: “A cleft is a gap or split in the upper lip and/or roof of the mouth (palate). It is present from birth.

It is actually more common then you might’ve thought as 1 in 700 babies in the UK are born with this facial defect. It occurs because parts of the babies face did not join together while developing in the womb.

Cleft Lip and Cleft Palate - Craniofacial Team of Texas
This is what it looks like

I had a unilateral cleft lip and palate.

What is it like living with cleft lip and palate?

Well, ever since I was born I’ve had multiple operations to fix it. My mum has forgotten the exact amount of operations I’ve had because of having it but she says it’s in the double figures. I’ve had so many problems with my body, which I’m not so sure if it is because of having a cleft lip, but I will mention them. I have an underbite. I could potentially have jaw construction surgery depending on how bad it is. My teeth were so messed up that I had to go through years and years of braces. We are talking like 6/7 years. I had a brace put on the roof of my mouth and the braces on my top. I currently wear a retainer at night. I also have free veneers, which is a plus because they were free. I only have one front tooth so the song “All I want for Christmas is my two front teeth” is true. Luckily, the veneers have fixed it and I have two now, technically. The last operation I can remember to do with it was back in 2013. I was in year 6, which meant I was 10/11. It was March 1st, I woke up at 6am and I hadn’t eaten or drank anything since 8pm the night before. I am really weird because I love hospitals, I know, it’s weird. I think it’s because they’ve saved my life and they feel like a second home. Anyway, I was really excited as it was a day off school and I was going to the hospital. We arrived at Manchester Children’s Hospital (MCH) at about 7am and I was in a gown, on the table by 7:30/8am. I said “I love you” to my mum and I fell asleep for nearly 4 hours while they did it. I was in the hospital for three days, I think, and I had two weeks off school.

Living with cleft lip and palate was and is still difficult. It’s not easy looking different to all the other kids around you and knowing they know you look different. I was bullied in primary school by a few people. It was silly names like “pig face, flat nose, ugly” which now I look back on and laugh because they’re funny now but back then being a child they were the worst things you could call me. In high school, I wasn’t bullied and life was alright. However, no matter how old I am the staring never goes away and the older I get the more self deprecating it becomes because there are so many factors added to it. When I was younger I knew what people were staring at and now I don’t know whether it’s because of the way I look, dress, my weight or because of my makeup or other reasons. You get used to being stared at by everyone and I mean EVERYONE. No matter how old they are or what their gender is, you get stared at by everyone. I combat that with staring at back at them as they usually look away but you never truly know how it feels to feel so small because of a stare and the thing is, you know why they’re staring. It’s because you look different.

I remember I was going for a check-up at MCH and we were a bit early so mum closed her eyes. I was on my phone like a normal teenager would be and a car parked up, out came three girls, one looked 5, the other looked about 3 and the other was in a pram but was about 1 and a 1/2. They all stared at me through the front window. In that moment I felt so small even though I was a good 15 years or so older then them. I am very lucky that the doctors did a good job at fixing it but you can still tell I look different.

What I would tell other people living with cleft lip and palate

  • There are more people then you think who look like you.
  • Try staring at them back.
  • It will be alright. You might feel sad some days but it gets better.
  • Try and come to grips with it. Easier said then done but you will learn to live being you.
  • It makes you unique and special
  • YOU’RE BEAUTIFUL!

What I would tell everyone else

  • Please don’t stare. I get it. Humans are curious creatures, we like to look at the world around us but if you see anyone who looks different to you whether it’s someone who is missing an arm or leg, in a wheelchair or someone with a facial defect. Please DO NOT stare. It makes me feel more worse then I already am and it makes me feel uncomfortable.