We have written this leaflet to answer any questions and concerns that you may have. The care of your baby involves several specialists who work in the cleft team. Your baby will be seen regularly by members of this team to plan future treatment, observe your child’s progress and monitor future growth and development. Your child will be seen in the cleft clinic until they are 16 and may be transferred into the adult cleft services is required.
If you still have any questions, please contact either your specialist nurse or any member of the team regarding their input.
About clefts
Clefts of the palate are not uncommon and about one in every 700 babies born each year in the UK will have a cleft involving part of the lip and palate (roof of the mouth).
Your baby has a cleft palate and initially you may feel upset and worry about coping, especially during the first few weeks. At the very outset we would like to reassure you that skilled help is available to assist you and your baby.
Our aim is to provide you and your child with the highest standards of care and so obtain the best possible outcomes from treatment. Initially it is not uncommon for parents to feel distress and to be overwhelmed at first. These feelings usually begin to fade as you begin to understand more about cleft palate, meet the specialists involved in the care of your baby and plan for future treatment. However, if these feelings continue, further help and support is available.
Please feel free to ask questions at any stage.
Any of the specialists will be happy to discuss aspects of your child’s treatment or to arrange for you to talk with one of the other team specialists if this is felt to be more appropriate.
The cleft lip and palate team
- Specialist nurse: Supports parents at home, and gives advice with feeding
- Speech and language therapist: Monitors and treats speech and language problems
- Cleft surgeon: Repairs the clefts
- Geneticist: Investigates the potential reason for the cleft occurring
- Paediatric dentist: Children’s dentist who looks after your child’s baby teeth
- Orthodontist: Dentist who positions teeth with braces
- Ear, nose and throat surgeon: Monitors and treats hearing problems
- Paediatrician: Doctor who treats children
- Clinical psychologist: Offers chance to talk through any difficulties with you or your child
- Anaesthetist: uses medicine to put your child to sleep during the operation
What is a cleft palate
The word cleft means a gap between two sides. A cleft palate is a gap within the roof of the mouth. The palate separates the mouth and the nose. The area behind the teeth and gums is called the hard palate and the muscular area at the back is called the soft palate. The cleft may extend from the soft palate into the hard palate. In some children the palate may look complete, but the muscles are not joined together. This is called a submucous cleft palate.
If you wish to see some photographs, your specialist nurse will be able to arrange this.
There are some diagrams on the next page showing a cleft of the soft and hard palate.
How does a cleft palate occur?
The palate forms during the early stages of pregnancy. Initially it forms as separate halves that join in the middle. If this joining does not occur, then a gap (cleft) will be left.
View looking inside the mouth
Illustrations by Diane Mercer, medical illustrator
Why do clefts occur?
It is not fully understood why this happens, so as parents it is unlikely that you could have done anything to prevent this. Sometimes there may be a genetic or inherited link with possibly a family history of a cleft lip and palate. We may ask a doctor who looks at inheritance patterns (the Geneticist), to investigate this further.
Occasionally parents may experience feelings of anger or guilt. Such feelings are often part of the necessary coping or adjusting process. Whilst these feelings vary in degree, they are all natural reactions and as such are understandable. In time these early feelings usually pass as you become more confident in looking after your baby and become closely involved in your child’s plan of future care and treatment.
How will I feed my baby?
Some babies born with a cleft palate may have difficulty sucking effectively because air leaks into the mouth from the cleft. The wider the cleft in the palate, the harder it will be for your baby to create the suction needed to withdraw the milk. Babies with cleft palate can appear to be sucking well, but the extra effort needed may lead to tiredness and poor weight gain. With support and guidance from the specialist nurse, initial feeding difficulties can usually be overcome.
Our experience shows that babies with a cleft palate can feed successfully and move on to a weaning diet. Breast-feeding a baby with a cleft palate may prove more difficult, due to the inability to create a suction. You can choose to breast feed for comfort and baby will need to have extra milk given from a specialist bottle. This can be your own breast milk or formula milk. If you are bottle feeding your baby, the specialist nurses will provide you with a specialist bottle and show you how to use them. Extra feeding bottles can be ordered from CLAPA (Cleft Lip and Palate Association).
When you go home from the maternity unit you will continue to get support and advice from your specialist nurse, who will visit you at home.
In our team, the cleft surgeons prefer the babies not to suck on a teat, immediately following their operation. So, a free-flowing beaker should be encouraged at this time. This is a beaker when tipped, the milk will free flow from it and the baby doesn’t need to suck.
When will the cleft palate be repaired?
The cleft surgeon is likely to operate on the cleft palate when the baby is between 10 to 12 months old. However, if your baby was born early or there are other medical conditions, then these times may change.
The operation is carried out under a general anaesthetic in hospital. Your baby will be given pain relief both in theatre and on the ward to keep them comfortable. Recovery is generally quick in babies and feeding is started shortly after the operation. The stay in hospital is usually between one to two nights. If you wish you can stay overnight with your baby, the wards can arrange for one parent to stay. If you have other children, it is understood that this can sometimes be difficult.
To prevent damage to the mouth after the operation, feeding should continue from a free flow beaker for at least four weeks. To keep the palate clean, you will need to give your baby water after each feed. Dummies or pacifiers are not allowed either during this time.
Will the cleft palate affect speech?
Many children born with a cleft palate will develop normal speech and language without the help of a speech and language therapist. Problems can arise when the soft palate is not working properly and does not make a seal between the mouth and nose. Air can then escape into the nose when speaking. This can make speech less clear and have a nasal sound.
Some children may have difficulty in making certain speech sounds even though the palate is working well. The speech and language therapist will monitor your child regularly, so that any problems can be picked up early and therapy offered if necessary.
Will the cleft palate affect hearing?
A cleft of the palate can affect the middle ear and lead to a build-up of sticky secretions – a condition sometimes referred to as glue ear. This condition is quite common in all children; however, it is more common when a cleft palate is present. Glue ear can lead to impaired hearing as such it is recommended hearing is monitored and treated, if necessary.
If glue ear becomes a problem, then an ear nose and throat (ENT) surgeon will make further assessments and advice if treatment is needed.
The most common treatment currently in the UK is an operation to correct this by draining the sticky fluid and placing very small tubes into the eardrums. These are called grommets. Increasingly glue ear is also being treated with hearing aids. Most treatments for glue ear are for a few years until the glue ear resolves.
Will the cleft affect my child’s teeth?
If the cleft involves the gum area (alveolus) in the top jaw, there may be an extra or missing tooth. Sometimes teeth near the gap may be twisted or may come through later than usual.
The orthodontist will carefully monitor how the teeth come through and bite together. It is important that your child grows up to have healthy teeth. Regular brushing and avoiding sugary foods and drinks will help this.
The first teeth are very important as they help to guide the second or permanent teeth into the best position. If the first teeth are lost early due to decay, then it is more difficult for the Orthodontist to straighten the permanent teeth later.
From an early age (as soon as first baby teeth appear) you should begin to take your child along to your dentist who will be able to offer advice on caring for the teeth and gums, as well as providing any necessary treatment.
Our own team will also check your child’s teeth and arrange any special help they may need.
After the cleft palate has been repaired will any other operations be needed?
If the cleft also involves the gum then a further operation is often needed around 8 to 11 years of age to repair the gum to help with adult teeth coming through.
In a small proportion of children, speech and language therapy is not enough to correct continuing speech difficulties and a further operation may be necessary.
The need for any additional surgery will be discussed with you during your visits to the cleft clinic.
Is it possible to meet other parents who also have a child with a cleft?
Yes, your specialist nurse will know other families in your area and can introduce you to them.
The parent support group CLAPA (Cleft Lip and Palate Association) will also provide local contact with other families. Your specialist nurse can provide you with details of CLAPA and a contact person for your area.
For further information
Contact
Newcastle Cleft Lip and Palate Team
Royal Victoria Infirmary
Queen Victoria Road
Newcastle Upon Tyne
NE1 4LP
Contact
Leeds Cleft Lip and Palate Team
Martin Wing
Leeds General Infirmary
Great George Street
Leeds
LS1 3EX
CLAPA (Cleft Lip and Palate Association)
Useful contacts
PALS (Patient Advice and Liaison Service). For help, advice and information about NHS services. You can contact them on freephone 0800 032 02 02, email [email protected].
Useful websites
If you would like further information about health conditions and treatment options, you may wish to have a look at the NHS website at www.nhs.uk
If you would like to find accessibility information for our hospitals, please visit the AccessAble.
