Treatment

Cleft patients may require many years of treatment. Treatments needed vary depending on the cleft condition. Your child may need a few of the range of treatments but probably won’t need all of them.

Lip and palate repair: NAM

Pre-surgery, your surgeon may feel a NAM (nasoalveolar moulding device) will help your baby. Information on NAMs here

Lip and palate surgeries

Timing of repair can depend on baby’s growth / health / tissue growth / severity of the cleft / hospital schedules / surgeon schedules / availability of beds and surgery time. Surgery in incredibly scary for parents but remember there is lots of support available.

• Cleft lip is usually repaired at 3-4 months
• Cleft palate is usually repaired at 6-12 months of age

Later surgeries may include

• Grommets (tubes in the ears)
• Fistula repairs
• Pharyngoplasty
• Scar tissue reviews
• Bone grafts
• Jaw surgery
• Rhinoplasty

Some cleft affected children only need one surgery. Others need multiple surgeries over a number of years. More information on surgery here.

Ear problems

• The palate operates the opening and closing of the Eustachian tube (which drains fluid from the ears), so for cleft palate patients, this function does not occur
• Many children with a cleft involving the palate have repeated ear infections and a condition called “Glue Ear”. Constant fluid in the ears means many of these children don’t hear properly.
• Grommets are often required to treat this problem, and will usually be inserted at the time of palate repair if required. Throughout early childhood grommets may be required repeatedly until the Eustachian tube matures and begins to function on its own.

Speech problems

• Children who have had fluid on the ear resulting in hearing loss often have delayed speech. This combined with the fact that these children have been fed differently (meaning their jaw muscles are often not as well developed), and have a palate that may not function “normally” means some will need speech therapy.
• Some children with a cleft require no therapy at all, others require a little help with pronunciation, and others require intensive work and sometimes surgery to correct speech problems.

Orthodontic treatment

• A child with a cleft may have mis-shaped teeth, missing teeth, extra teeth, or a crooked arch, and may require orthodontic treatment (straightening of the teeth) at some stage
• Where the cleft has affected the gum and hard palate, a bone graft may be required to create a spot for the teeth to come through
• Every person with a cleft, whilst under the age of 22, is entitled to extra Medicare benefits for dental and orthodontic treatment.

Costs for treatment

Medicare Australia recognises that the treatment for a person with a cleft may last into their adult life. The Cleft Lip and Cleft Palate Scheme helps families to meet treatment costs for specialised services for cleft lip and cleft palate conditions. Card holders are entitled to claim additional benefits from Medicare, to offset some of the dental costs associated with having a cleft.

In addition, Medicare Australia provides an information service and call centre to assist families in understanding the process, and what can be claimed. More information on the Cleft Lip and Palate Scheme is available on their website or call the hotline 1300 652 492.

More information on Medicare Cleft Lip and Palate Scheme

CleftPALS Australia presented a united case to the government a few years ago, successfully appealing for an extension to the eligible age from 22 to 28 years old.

Appearance

Every cleft is different, and every child heals differently. Some children will need just one or two operations and some will need more to achieve as “normal” appearance as possible. The highly trained medical professionals who will look after you consider each cleft affected child separately and guide you along the way.

Through the Contact Parent network or Support Play Dates you can meet older children who were born with clefts. Many parents find it very reassuring to meet other cleft kids and see that they are normal, healthy and happy – and look great.

We are volunteers, not medical professionals. Information on this site is not a substitute for professional advice and no responsibility is accepted by CleftPALS.