What Happens Now?
The treatment pathway for this age group depends on your child’s specific needs, their cleft, and how it affects them.
In general, you’ll be seeing less of your Cleft Team and the hospital than you will have done in your child’s first year, which may come as a relief, but remember that this may mean you don’t get as many chances to ask questions and check up on your child’s care. If you do have concerns, feel free to contact the Cleft Team at any time. This could be something as simple as checking when your child’s next appointment will be, or you could even ask to make an appointment yourself if something is worrying you.
VIDEO: The Future, 4:35
This short video goes through what will happen to your child in the future, including what kind of treatment they will receive as they grow up and what you can expect.
One of the goals of cleft treatment is that affected children have good quality, intelligible (understandable) speech by 5 years old so they can start school with confidence.
Around half of all children with a cleft palate (with or without a cleft lip) will need some form of speech and language therapy to achieve this. For some, this will be a fairly minor intervention, but others will need longer and more intensive courses to get them speaking clearly. Occasionally, further surgery is recommended to help children sound less nasal by reducing the amount of air which escapes through the nose when they talk.
Speech problems are rare in children who only have a cleft lip, but if you are worried about your child’s speech development it’s best to get an assessment early on.
A Speech and Language Therapy Assessment, if it’s considered necessary, will usually take place at around 18 months. Treatment will be offered if it is needed, though the need may not become apparent until the child is older.
A further assessment takes place at around 3 years old, and again treatment is recommended if it’s needed. Assessments for speech problems at this and later stages may involve a nasendoscopy or videofluroscopy.
Children with a cleft palate will have an audiology assessment at regular intervals at their local cleft clinic. This will happen up to 5 years of age, when they will have their full assessment with the Cleft Team.
This assessment will identify any hearing problems (such as glue ear) early and allow your child to get the treatment they need, which may include hearing aids or grommets.
Hearing issues can delay a child’s speech development and make school and nursery very difficult, so it’s important for them to be managed early on.
Usually, children with a cleft palate grow out of hearing issues by the time they are 6-8 years old.
Children with a cleft which affects their palate and/or gum are especially vulnerable to issues like tooth decay, as the shape and position of their baby teeth may mean they’re harder to keep clean.
Good dental health is important for everyone, but it’s especially important for children who may need orthodontic work later on in life, so it’s something parents of children with a cleft should take special care with.
The Paediatric Dentist with your cleft team will offer advice and/or treatment if necessary, and may consult with your family dentist to ensure your child gets the best possible treatment which is tailored to their needs.
As your child grows up, they will become more aware of things going on around them, including visits to the hospital and ways in which they may be different from other children. While very young children your child might meet often don’t notice (or don’t care!) about things like scars or hearing aids, as they grow up they may start to get comments or questions, so it’s important they understand how to respond to these.
Psychological support is available at any time along the treatment pathway, but there are certain points where it may be especially helpful. Starting school is one of these points, and parents may wish to talk to the Clinical Psychologist (if one is available) about any concerns.
More about starting school & psychological support
Lip and/or palate re-repair or revision surgery
In some cases, children will need additional surgery to fully repair their cleft lip and/or palate. Your team will talk to you about these and explain when and why they are needed.
A child with a cleft should receive a full assessment by all specialists in the Cleft Team at age 5 to ensure that any ongoing or emerging issues are being dealt with appropriately.