Treatment
How is it treated?
In Australia, cleft lip and palate treatment is carried out by Cleft Teams around the country. These are teams of cleft specialists, including plastic surgeons, nurses, psychologists, dentists and more, who are all dedicated to caring for people with cleft lip and/or palate.
This means people born with a cleft in Australia can expect the best possible treatment from infancy through to adulthood.
There is a 20-year treatment plan in place, but every individual patient is different and most will not need all the services offered.
Here, we will explain the different kinds of treatment and how they all fit together.
Surgery
Babies born with a cleft will need repair surgery to close the gap left by the tissue not coming together in the womb. Usually, a cleft lip will be repaired at 3-6 months, while a cleft palate will be repaired at 6-12 months.
Cleft repair surgery involves joining the tissues that did not join together while your baby was in the womb. The aim is for the best possible functional and aesthetic outcome as your child gets older.
“We’re not going to sugarcoat this. One of the toughest things about having a child with cleft is knowing that when they are under one year old you will have to take them into a hospital to have surgery. They will have to have general anaesthetic, to endure hours on the operating table, and they will be deeply uncomfortable and unhappy when they wake up and for several days or weeks afterwards. It is a real challenge for you as a new parent, and something that we wouldn’t wish on anyone.”
“However, we survived. Our little ones survived and they amazed us with their bravery and their ability to bounce back. And if we can do it, then so can you and so can your little one.”
– Two mums from South London
What Does Repair Surgery Involve?
Cleft repair surgery involves joining the tissues that did not join together while your baby was in the womb. The aim is for the best possible functional (how it works) and aesthetic (how it looks) outcome as your child gets older.
There are a number of different surgical techniques practiced by cleft surgeons, so the specifics of the surgical procedure itself may vary, but the results will be largely the same. You may hear things from other parents that are different to what you have been told by the surgical team, but this should not be a cause for concern. The surgeons working in the Cleft Teams are cleft specialists and perform operations on many babies like yours every year, so you can rest assured that your baby is in good hands. If you have any specific questions or concerns about the procedure, talk to your Cleft Team.
Surgery will be done under general anaesthetic (where your baby is asleep the whole time). One or both parents may be able to go into the anaesthetic room with your baby and stay until he or she is asleep. This usually involves your baby breathing some gas. Once your baby is asleep, a tube will be passed into their airway to help with breathing, and a cannula (a thin tube) is put into a vein to help give fluids to your baby during and after surgery if necessary.
There are risks during every surgery, but with the team of experts looking after your baby this risk is very small and carefully managed every step in the way. Talk to the team if you have any concerns.
Cleft Lip Repair
Cleft lip repair surgery takes place when the baby is at least 3 months old.
A cleft lip repair involves reconstructing the shape of the lip and the nose and joining the tissues that were not joined before birth. There are a number of different techniques which depend on the shape of your baby’s cleft and the surgeon’s preference. If the palate is involved, part of it may be repaired at the same time.
Dental impressions may be taken before or during the operation so the team has an accurate record of your baby’s cleft to compare with the future development of their mouth.
Afterwards, some bleeding from the mouth is to be expected, and you may see some stitches, swelling and crusting on the lip. Sometimes a small piece of foam is used to hold the nose in its new shape. Splints are sometimes placed on the baby’s arms to stop them from touching the stitches.
Your baby will look quite different after the surgery, and this is something you should be prepared for.
The surgery usually takes from 1-2 hours depending on the cleft, but your baby will likely be away from the ward for 2-4 hours.
Babies will usually stay in hospital for one or two nights after the operation, however if the cleft lip is partial some babies may be discharged on the same day.
Cleft Palate Repair
Cleft palate repair surgery usually happens between 6-12 months.
Your palate (especially the soft palate) is very important for not just eating and swallowing, but also for speech, so a palate repair surgery aims to make sure the palate works as well as possible. It is repaired in layers, with the focus on reconstructing the muscle of the soft palate.
Dental impressions may be taken before or during the operation so the team has an accurate record of your baby’s cleft to compare with the future development of their mouth.
Sometimes, small incisions are made to the side of the cleft to ‘loosen’ the tissue and give the surgeon more to work with, but these will heal very quickly.
“His surgeon had made a small insertion into each side of his mouth which meant that there was more tissue available to pull the soft palate together. When we looked in his mouth there was a lot of sutures, it looked like he had a mini zip on each side if his mouth and a big one up the middle of his palate. But, it was astonishing to look into his mouth and see a complete palate!”
– a parent
As with a cleft lip repair, your child’s mouth will be quite sore afterwards (especially at the corners where the lip has been stretched during the operation), and splints may have been placed on your child’s arms.
What happens now?
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.One or more follow-up procedures may be needed once the lip and/or palate repairs have healed.
Additional surgery to help with speech may sometimes be necessary for those with a cleft palate.
Children with a cleft that involves their gum may need an Alveolar Bone Graft procedure when they are 7-12 years old to make sure their adult teeth come through properly.
As they get older, teenagers and adults with a cleft may choose to have more surgery once their face has stopped growing. These can include:
• Rhinoplasty to change the shape and/or function of the nose
• Lip revision surgery to change the shape of the lip after a cleft repair
• Osteotomy (or ‘orthognathic’ surgery), which is where the jaws are realigned to change the appearance of the profile as well as how the teeth fit together
• Restorative dental surgery, such as implants or veneers, to improve the appearance of missing or misshapen teeth
These will all be under general anaesthetic, and if necessary the patient will be monitored both before and after surgery by specialists to check for changes in speech, etc.
Speech
Your soft palate (the bit towards the back of the throat) is part of the mechanism that blocks off your mouth from your nose while you talk, so a cleft palate can make speech sound nasal or make certain sounds unclear, especially consonants like t, b and d.
Around half of children with a cleft palate will need some form of Speech and Language Therapy to help them speak clearly, and this can be available to adults with speech issues too. Usually an assessment is carried out at the Cleft Centre and treatment, if necessary, is carried out by local providers who may see children individually or in a group depending on what is needed and what is available in the area.
The goal is for children to have clear, intelligible (understandable) speech by the age of 5 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.
Hearing
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.
Dental and orthodontic care
People born with a cleft can have a higher risk of tooth decay due to the placement or shape of some of their teeth, and so may need extra attention from a dentist to keep their teeth and gums strong and healthy. Parents need to take extra care to maintain good dental health in children.
If the cleft involves their gum, children will probably need some kind of orthodontic treatment which usually includes wearing braces or a retainer.
For adults, dental and orthodontic work for issues caused by a cleft should be covered under Medicare – you should not have to pay for private treatment if it is something which is necessary.
Psychological services
Clinical Psychologists work in or with many Cleft Teams to support individuals and families affected by cleft lip and palate. They are available for appointments from diagnosis right through until adulthood.
You don’t need to have a ‘psychological problem’ to see the Psychology team. They are there to talk as and when you need them, and through meeting with families and individuals they try to find out if more support is needed.
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.
Some of the reasons you might see a Clinical Psychologist from your Cleft Team include:
• Talking to someone about worries you have about your or your child’s treatment
• Help making decisions about treatment
• Extra support during times of change, like starting school or moving into secondary school
• You and/or your family have trouble talking about or coming to terms with a cleft lip and/or palate
• Problems with bullying or teasing
Further treatment for children (5-12)
Your child will already have had their cleft lip and/or palate repaired surgically. They should also have been assessed (and treated) for any issues to do with hearing and speech. By 5-6 years old, children with a cleft should have:
• Any hearing issues addressed
• Dental health which is at least as good as children without a cleft in their region
• Good quality, intelligible speech.
Your child’s treatment will depend on their individual needs. For children aged 5-12 their care pathway may include:
• Full assessment by the multi-disciplinary Cleft Team at 5 and 10 years old for all children, including hearing checks, speech and language assessment, dental checks, etc.
• Assessment between 7 and 9 years of age by the Cleft Team’s orthodontist, paediatric dentist and surgeon responsible for Alveolar Bone Grafting (ABG), followed by surgery if necessary between ages 8-12
• Support from the clinical psychologist for the child and/or their family
• Paediatric dentistry and orthodontic treatment (e.g. braces) as needed
• Speech and Language Therapy
• Surgery to revise a cleft lip repair and speech (velopharyngeal) surgery if necessary
You will probably have taken your child to many appointments during their first few years of life, but as they get older they won’t need to be seen as regularly. This may mean you won’t be in contact with the Cleft Team as often, which can be a cause of concern for some parents. If you aren’t sure when your child will have their next appointment, or if there is any part of their care you are concerned about, call your Cleft Team.
Teenagers (13-18) growing up with a cleft
When you were younger, your parents will have made the decisions about your treatment together with Cleft Specialists at the hospital. You will have had operations as a baby to close the gap left by your cleft, and you may have had other operations to help with your speech or an Alveolar Bone Graft when your adult teeth started growing through.
As you get older, you will naturally become more involved in your own care. If you are curious or worried about anything, you should feel free to ask your Cleft Team until you understand and feel comfortable with your treatment options and plan.
Remember, everyone in your Cleft Team is working to make sure you’re healthy and happy, and that includes making sure you don’t feel worried about anything to do with your cleft or treatment.
If you’re under 16, professionals will want your parents to be involved so they can support you with any treatment, but you might find that you have questions that you don’t want to ask in front of your parents. It’s fine to ask to speak to someone from your Cleft Team by yourself, or to ask for an appointment with the Clinical Psychologist to help you talk through any worries.
The Clinical Psychologist can also help you with important decisions like whether or not to undergo further treatment or surgery. It’s okay to be unsure about this, or to have a different view from other people, even your parents. For example, some young people with a cleft decide against having jaw surgery, while others choose to go ahead with it. It’s important to listen to your clinicians and make sure you have all the information before making a decision, but remember that ultimately it’s up to you.
When you are 16-20 years old, if you have finished your treatment you will probably be discharged from the Cleft Team. This means your ‘treatment pathway’ is finished. However, you can still have further appointments or treatment at any time in the future if there’s anything else that you think would be beneficial for you.
It will be your responsibility to book appointments and get help for any problems you’re having, but it will also mean you’re in control of your own health-care, which is an important step towards adulthood.
Top tip: Write down any questions or worries you have before an appointment with your Cleft Team, and take your time to make sure all of them are answered. Even if you think they’re silly questions, it’s important to ask!
What treatment might you get as a teenager?
Every Cleft Team is different, so it’s important to talk to yours if you want to know more about what you can expect over your teenage years.
The treatment you receive from the Cleft Team as a teenager may include some of the following depending on your unique concerns and needs:
• Orthodontic care (e.g. braces)
• Orthognathic (jaw) surgery
• Discussions with a Clinical Geneticist if you are curious about whether any children you may have in the future are likely to be born with a cleft
• Revision surgery for your lip and/or nose
• Dental care
• Advice about your speech and accessing therapy if you need it
• Appointments with the Clinical Psychologist to talk through any problems or worries you’re having and to support you in making decisions about further treatment