Talking together about cleft

Who is the leaflet for? What is its aim?

This leaflet is aimed at parents, carers or relatives of children born with a cleft lip and/or palate. The aim is to give information and suggestions to help them talk to children about their cleft in the future/when their child may understand about their cleft.

Why should you talk to your child about their cleft?

Helping your child understand their cleft will make them more confident if or when others ask them cleft-related questions. You might worry that talking to your child about a difference he/she has not yet noticed will make things worse, however avoiding the topic can cause confusion. Children are curious and will welcome clear, simple facts. Knowing about their cleft can help to understand why they may have visible or speech differences, need dental treatment or frequent hospital visits for example.

A simple explanation reassures them that nothing is wrong with them and reduces anxiety. By openly discussing their cleft early and naturally in everyday life, you help them build their own story. Your openness will prepare them to talk about their cleft confidently in the future.

How should I talk to my child about their cleft?

Below are some suggestions to help you talk about cleft:

Some families have found it useful to build up a bank of photos or information to show their child later on. Some parents have put these photos together to make a book about their child’s journey and some children have found it fun to make their own and share it with nursery or school.

When looking back at photos from the early days, discuss the changes and events that happened. For example, here you are when you were born – see how you had a gap in your lip? And this is you after the operation at the hospital to close the gap. Can you see your scar? I also have a scar on my leg/chin/arm, etc…

It is important to remember to give your child this information alongside other memorable facts about them as a baby, for example, what was their favourite toy, a funny family story or how brave they were. This will reinforce all the other important, loveable things about them.

Examples from parents:

• ‘I just tell the kids who ask to feel the little lines above their lip. I tell them that our lines joined together before we were born but my baby's did not join. I tell them it does not hurt and the doctor is going to close it.’
• ‘Having a family photograph album with pictures of her before and after her operation made it really easy to talk about her cleft lip as just one more event in her life, just like her first day of school.’
• Remember - your child’s cleft is part of who they are/part of their identity.
• These are some of the words/sentences you might find helpful to use:
• Your lip/palate didn’t close fully when you were growing inside mummy’s tummy.
• You looked different when you were born/you had a special smile.
• You were born with a little gap/split under your nose and/or inside your mouth. It did not hurt.
• You had special bottles to help you drink.
• You had an operation(s) to help your eating and talking when you grow up.
• If you find talking a bit difficult, don’t forget you can also use the support of children’s books about difference or going to hospital, children’s TV programmes or playing with hospital toy sets. Role play staying in hospital with your child’s own toys/dolls can also be helpful.

Resources:

CLAPA - The Treatment of Cleft Lip and/or Palate (A Parent’s Guide)

https://www.clapa.com/wp-content/uploads/2015/10/RCS-A5-2019.pdf (opens in a new tab)

CLAPA – Callie and Her Cleft

https://www.clapa.com/wp-content/uploads/2016/11/A5_CallieAndHerCleft.pdf (opens in a new tab)

Books:

Jack's New Smile: Having a baby with cleft lip and palate - Ruth M Trivelpiece

Beth and Her Cleft – Nicholas Bastidas

Smile with Simon – Patricia Ann Simon

Adventures of Norah: Let’s Talk about Cleft – Sasha A Cooper

The Day Bert Smiled – Christine Maier and Aviva Brueckner

Books about difference - Spires Cleft Centre Website

Contact details

Cleft.NET.East (Cleft Lip and Palate Team)
East of England Cleft Network, Box 46, Addenbrooke's Hospital, Hills Road, Cambridge, CB2 0QQ

Cleft Office Tel: 01223 596272

We are now a smoke-free site: smoking will not be allowed anywhere on the hospital site.