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Scary Rooms with Lots of Clever People

cleft lip and palate toddler, real cleft lip and palate patient story

I was born with a cleft lip and palate, which means I was a patient from the moment I opened my eyes. As a baby, I obviously had no idea what was going on and it was up to my parents to make treatment decisions. As I got older, I started to understand more, and appointments became a little more intimidating. I can remember at five years old being in a room full of clever people (a cleft team check-up) and shying behind my mum’s arms, whilst the doctors would speak more to my parents than to me. This of course isn’t outrageous, but I remember feeling confused and worried as I sat there wondering what was going to happen.

I remember only one particularly bad appointment where I had my five-year-old records taken. This entailed saying funny sounds for a speech therapist and listening to quiet beeps for a hearing test. I then went for my first mouth impressions. The orthodontist put the large plate filled with disgusting paste in my mouth before I knew what was happening. It felt like I couldn't breathe, and I remember crying and choking. This was a horrible experience, and the orthodontist didn’t help matters by failing to explain what was going to happen, why and that it was going to be difficult.

At five years old it can be hard to appreciate that someone is making you feel uncomfortable for your own good and it’s understandable that I was confused by big words. My parents helped me through these appointments by:

Asking questions for me when I was younger

If I was too shy to say them (whilst encouraging me to ask something and feel confident to say anything).

Reassuring me if something hurt

Whilst the orthodontist made me feel silly for feeling uncomfortable, my parents gave me sympathy. This may sound very self-indulgent, but it made me feel better to know that I was brave and strong, and that it was okay to cry.

Never making a hospital appointment a big deal

There was never any big build up or unnecessary reassurance before a hospital visit so they never seemed like a big deal, they were just part of my childhood routine. While they would remind me and say to think about any questions I wanted to ask, they never made an appointment feel like a big worry or inconvenience – I never saw their own fears, which helped to keep me calm.

Chocolate buttons

This is so simple, but chocolate buttons were a staple of any horrible visit. They were a small treat that would help to get rid of the orthodontist’s paste or help if I was upset by some news about the next stage of treatment. They weren’t bought for every appointment, but they made a huge difference when I needed a little ‘pick-me-up’.

Writing down what the doctors said

Although it would have been better to talk directly to my doctors, sometimes I felt silly or shy if I didn’t understand what was happening. Whilst I often wouldn’t want to talk about my cleft at home, I can clearly remember asking my parents what was going to happen when I was worried, and they could easily go back to their notes and explain it in a clear and simple way.

I know these sound like really obvious things to do as a parent, but honestly a little sympathy, encouragement and perspective massively helped normalise my cleft treatment and made it seem less scary. As I got older, my doctors helped by:

Listening to my worries

Explaining what they were going to do

This includes managing pain expectations as much as possible – hearing ‘this will hurt a bit but won’t last long’ was so helpful as it meant I didn’t panic when I felt the pain – I knew it was to be expected and knew I’d get through it.

Giving me control

Knowing that I could stop the appointment if I needed (e.g. to take a minute to breathe/flex my jaw) would help me stay still and feel less panicky about what was happening.

Ultimately, a room full of about 10 medical professionals (who are essentially strangers) is unlikely to be a welcoming sight for any child. However, the help from my parents and changes in the ways doctors handled appointments helped to reduce appointment worries and started building those important doctor-patient relationships, to the extent that when I was 13 I actually cried when the orthodontist who’d upset me when I was five retired.


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