As your child grows up, they will be more aware of things going on around them, including visits to the hospital and the ways in which they may be different from other children.
Talking about these things openly and honestly with your child can help them to grow up feeling more informed and confident about their cleft and their treatment.
While it’s important to talk to your child about their cleft, it’s also important to remember that their life will be full of challenges and achievements which have nothing to do with their cleft. Having a cleft is only one part of who they are.
Talking about their cleft
Make some time to sit down with your child and explain their cleft in simple terms that they will understand. Baby pictures can be a big help, and they may enjoy seeing themselves grow and change.
Encourage them to ask questions about any aspects of their condition or treatment. If you don’t know the answer, tell them you’ll try to find out.
Your child will already have had to deal with much more than most other children their age. Praise their bravery and reassure them that they’ll be well taken care of as they grow up.
It can be helpful to teach your child a simple sentence or phrase to explain their cleft to other people. This will help them face questions from their peers and others with confidence, especially when they start school
For example, “I was born with a hole in my lip, and the doctors sewed it up when I was a baby.” You can talk to them about which words they are most comfortable with and work together to come up with a phrase that they feel good about.
Talking to your child about their treatment
In general, ensuring your child feels able to express any worries they have about any part of their care is very important. This will help them grow up feeling confident about taking charge of their own treatment.
The Clinical Psychologist with your Cleft Team can help you and your child talk through any concerns at any point along the treatment pathway.
About medical appointments
Children who have had many hospital appointments in the past may feel anxious about visits in the future. They may associate the hospital with being uncomfortable or being under a lot of scrutiny.
It helps if you can explain to your child exactly what the appointment is for and what they can expect. This will usually be explained in the appointment letter.
If your child still seems overly anxious, you can mention this to the hospital staff and discuss ways they might be able to help.
About operations
Operations can be a scary time for anyone, even more so for children who won’t fully understand what’s happening. It’s important to make time to talk to your child about any upcoming operations and make sure they have all their questions answered.
Common questions include how long they will be in the hospital, how long they will take to recover, and if and when they will feel any pain or discomfort.
Usually, you and your child will be able to discuss the procedure with the surgeon. Encourage your child to think of questions beforehand, no matter how ‘silly’, and write them down to make sure they’re answered.
There are a number of books to help prepare children for a trip to the hospital, like ‘Monkey Has an Operation‘ from the Monkey Wellbeing series.
Talking about their Cleft Team and other health professionals
It can be difficult to understand the role of each professional in a Cleft Team. Together with young volunteers at CLAPA, we’ve put together explanations of what these different health professionals do.
If your child has an appointment to see one of these health professionals, use the explanation below to help them understand their role.
There are two guides: one for children below, and one for teenagers.
Paediatric (pee-dee-ah-trick)
Paediatrician (pee-dee-ah-trish-un)
A doctor or nurse who is trained to look after babies and children.
Consultant (kon-sull-tant)
A doctor who has had lots of extra training about a part of the body or a medical condition like cleft.
This is a special nurse who knows all about cleft lip and palate. They help parents and carers when they find out their baby will have a cleft.
When the baby is born, they help parents and carers learn how to use the special bottles to feed their baby. They also help families as their baby grows up.
A surgeon does operations, and a ‘cleft surgeon’ has had lots of training about operating on people born with a cleft.
A cleft surgeon will have closed the gap left by your cleft when you were a baby.
Maxillofacial (max-ill-oh-fay-shul)
A Maxillofacial Surgeon’ (or ‘Max Fax
Surgeon’ for short) is a surgeon who has special training to make them an expert on operating on the face and jaws.
Anaesthetist (uh-nees-tha-tist)
Anaesthetic (ah-nuss-thet-ick)
This is a special doctor who gives
‘anaesthetic’ medicine that makes you fall asleep when you are having an operation. This is different to a normal sleep. The anaesthetist makes sure you stay asleep the whole time and that you don’t feel a thing.
This is a special dentist who looks after children’s teeth.
Consultant (kon-sull-tant)
Orthodontist (orth-oh-don-tist)
An orthodontist will look at how your jaw
grows, how your teeth develop, and how your teeth line up. If you need braces, the orthodontist will make sure these are fitted properly and are doing what they need to.
A Consultant Orthodontist has had extra training to make them an expert. The one in your Cleft Team is an expert in cleft lip and palate.
A restorative dentist works mostly with adult patients to repair or replace damaged or missing teeth.
Speech and Language Therapists (SLTs) can help people learn to make certain sounds or change how these sounds are made.
The Speech and Language Therapist in your Cleft Team is an expert on helping people born with a cleft to change how they speak.
An ENT Specialist is an expert in conditions and illnesses to do with the ears, nose and throat
Audiologist (aw-dee-ol-uh-jist)
Audiological (aw-dee-ol-uh-jee-kul)
An ‘Audiologist’ is a kind of doctor who helps with hearing. They can tell you if you have any issues with your hearing and give you treatment to help you hear better.
The administration team makes appointments for patients. They also work to make sure everything in the Cleft Team is running as it should.
Geneticist (jen-eh-teh-sist)
‘Genes’ are things in our body that we get from our parents, such as the colour of our eyes.
A ‘Clinical Geneticist’ is a kind of doctor who knows a lot about genes and can help people born with a cleft and their families to understand why they were born with a cleft.
Radiologist (ray-dee-oll-owe-jist)
A radiologist is a doctor trained to give people x-rays. These use a special machine which can see through you and take pictures of the inside of your body.
Medical photography is a way of taking photos which will be useful to your doctors.