Cleft Palate

Cleft Lip & Palate Service Website

Cleft Palate

Clefts of the palate are not uncommon and about one in every 700 babies born each year in the UK will be born with a cleft of one type or another.

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.

Illustrations by Diane Mercer. Medical Illustrator.

How does a cleft palate occur?

The palate forms during the early stages of pregnancy. Initially it forms as separate halves that join together in the middle. If this joining does not occur then a gap (cleft) will be left.

Why did it happen?

It is not fully understood why this happens. As parents it is unlikely that you could have done anything to prevent this.

Sometimes there may be a genetic or inherited link and possibly a family history of a cleft. We may ask a Doctor who looks at inheritance patterns (the Geneticist) to look into 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.

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 in order to get 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 at the correct age.

It is your choice how you would like to feed your baby, either by breast or bottle. Breast-feeding a baby with a cleft palate may prove more difficult, but it may be possible. However, your baby may need to have extra milk given from a special bottle. This can be your own breast milk or formula milk. Your Specialist Nurse will provide these bottles and show you how to use them.

Giving milk by this type of bottle uses a method called ‘assisted feeding’. The soft plastic bottles can be squeezed gently. This helps the baby to get milk from the bottle and overcomes the difficulty caused by the cleft. The flow of milk is matched with your baby’s sucking and then stopped when your baby pauses to swallow and breathe.

In our team, the Cleft Surgeons prefer the babies not to suck on a teat, immediately following their operation. So a feeder beaker is used at this time.

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.

When will the cleft palate be repaired?

The Cleft Surgeon is likely to operate on the cleft palate when the baby is between eight and nine 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 three and five days. If you wish you can stay overnight with your baby. If you have other children it is understood that this can sometimes be difficult. If you would like, a visit to the ward can be arranged before admission, to meet the ward staff and see where you will be staying.

To prevent damage to the mouth after the operation, feeding should continue from a feeder 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. We also ask for your baby to wear small arm splints. The splints are to stop the baby putting things into their mouths, but do allow the baby to move their arms and grasp toys.

Will the cleft palate affect speech?

Most 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 if not picked up, monitored and treated if necessary.

The Ear Nose and Throat (ENT) Surgeon will examine the ears and arrange for hearing tests. If glue ear becomes a problem then the ENT surgeon may advise an operation to correct this by draining the sticky fluid and placing very small tubes into the eardrums. These are called grommets. With monitoring and where necessary treatment, your child should develop normal hearing.

After the cleft palate has been repaired will any other operations be required?

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 and your child 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.

CLAPA (Cleft Lip and Palate Association)

Tel: 020 7431 0033

www.clapa.com

Reference:

Royal College of Surgeons (2001) ‘The treatment of Cleft Lip and Palate- A Parents’ Guide’. Jameson Press. Cheshunt, Hertfordshire.