Cleft lip and cleft palate

A cleft lip or palate can result when parts of your lip, upper jaw or the roof of your mouth don't join properly. It happens early in pregnancy as the baby is developing.

The result is a 'cleft' or opening. This condition is called 'congenital' which means it is present at birth.

About one baby in every 800 in Australia is born with a cleft lip or palate.

The type of cleft lip or palate depends on which parts don't join properly.

Cleft lip: The upper lip has 3 parts. There are 2 large parts at each side and a small part in the middle. A gap can happen if one or more of these 3 parts do not join together. It happens when the fetus is 7 to 9 weeks old. Sometimes a cleft lip can be just a small notch in the gum.

Cleft palate: The roof of the mouth is formed when the fetus is 10 to 12 weeks old. The bones and soft tissues move from the sides of the mouth and join in the middle. If this does not happen properly, there will be a gap in the roof. This can just be in the soft tissue at the back of the mouth. Sometimes the gap can go all the way from the back of the mouth to the gums.

Cleft lip and cleft palate: When the upper lip, gum and roof of the mouth do not join properly there can be a gap. It can happen when the fetus is about 12 weeks old. The cleft can be on one side only (unilateral), or on both sides (bilateral). The opening is between the mouth cavity and the nasal cavity.

A cleft lip or palate are usually noticed as soon as the baby is born. The condition will start to be managed right away.

Sometimes a cleft or lip palate is noticed during an ultrasound. This is usually at about 18 weeks of pregnancy.

If a cleft lip or palate is suspected during your ultrasound, the doctor may recommend an amniocentesis. This is a test of the amniotic fluid around the fetus, which looks for other birth defects.

You should talk about the benefits and the risks of having amniocentesis with your doctor.

There are a number of treatments for babies who are born with cleft lip or palate.

Babies born with cleft lip or palate need help from a team of specialists in the cleft clinic. This is usually located at your nearest state children's hospital. A cleft coordinator will guide you.

Some of the specialists you might see include:

• cleft coordinator
• speech pathologist
• paediatrician
• lactation consultant
• dietitian
• audiologist
• ear, nose and throat (ENT) surgeon
• social worker
• dentist
• orthodontist

Your child should be seen regularly by a cleft clinic during their childhood. Visits to the clinic are usually at:

• 18-24 months
• 3 years
• 5 years
• 8 years
• 12 years
• 16-18 years

Surgery for a cleft lip or palate

Surgery can help the child's appearance and speech to develop normally.

Surgery to repair a cleft lip is normally done when your baby is aged between 3 and 6 months.

Surgery to repair a cleft palate is done when your baby is aged between 9 and 18 months. Your baby may need 2 or 3 different operations.

The type of operation depends on how the lip and palate have formed. The surgery is done in hospital by a specialist plastic surgeon.

Help with feeding

A baby who is born with cleft lip or palate will often need help with feeding. A cleft lip or palate can affect your baby's ability to suck. They may need to be fed with a bottle and special nipple.

Some babies might need a tube through their nose into their stomach to help with feeding. A midwife who is trained in supporting babies with a cleft lip or palate will help you feed your baby.

As they grow older, children with cleft lip or palate need to be checked for:

• hearing problems
• speech problems
• dental problems

As some children have problems with:

• ear infections
• tooth decay
• jaw development

Children and adults who are born with a cleft palate may have a nasal sound when they speak.

Cleft lip and palate repair usually leaves a scar that can easily be seen. There may be differences in the way the nose, gums and teeth look. For some people, this may cause problems with self-esteem.

The Services Australia's Cleft Lip and Cleft Palate Scheme can help with costs of some treatments, such as:

• orthodontic work and tooth removal
• oral surgery and operations to fix problems in the face, jaw and mouth
• some general and prosthodontic services given by your family dentist

Treatment under the scheme must start before you turn 22 years old. Treatment will stop when you turn 28 years. A doctor may apply for extra support for people after this age.

For more information, advice and support about cleft lip or palate, visit:

• CleftConnect Australia website
• Australasian Cleft Lip & Palate Association
• The Communication Hub — Cleft Lip and Palate factsheet

You can also call the healthdirect helpline on 1800 022 222 (known as NURSE-ON-CALL in Victoria). A registered nurse is available to speak with 24 hours a day, 7 days a week.