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About clefts
One in every 600 to 700 babies in Australia is born with a cleft – it’s one of the highest incidences of birth defect. In about one third of families there is a relative also born with a cleft, or an associated syndrome such as Pierre Robin Sequence. In about two thirds of cleft patients there is no family history or associated syndrome.
A cleft occurs when the lip and / or the palate fail to fuse during gestation:
- A cleft lip is a split in the upper lip. The lip is formed when two tabs of skin unite from the sides of the face at around 4-6 weeks of gestation, and a failure to fuse results in a cleft lip.
- A cleft palate is a split in the roof of the mouth, resulting in an opening between the mouth and the nose. Tissue grows in from the sides of the upper jaw and joins in the middle to form the roof of the mouth (palate), during the first two months of pregnancy. Failure to fuse results in a cleft of the palate.
Babies can be born with a cleft of the lip OR a cleft of the palate OR a cleft of the lip and palate. The cleft can affect one side (uni-lateral) or both sides (bi-lateral) of the lip and / or palate.
Many clefts are now being diagnosed by ultrasound. Those that are not detected this way will usually be diagnosed at or soon after birth.
Feeding:
- When a baby with a cleft is born there are usually feeding problems. Feeding problems can occur with any cleft type and are more common when the cleft affects the palate. The severity of the cleft doesn’t necessarily determine the degree of difficulty with feeding.
- Babies born with a cleft lip only (intact palate) can sometimes be breastfed. The baby needs to be positioned so that the cleft is filled with breast so that a seal is created.
- Cleft palate interrupts normal suction, as a seal cannot be created. A baby with a cleft involving the palate can usually not be fed directly from the breast.
Most common feeding solutions are:
- Expressing breastmilk and feeding through a bottle
- Formula feeding through a bottle
- Cleft babies usually require special bottles and teats such as the Special Needs Feeder (Haberman). CleftPALS has information on bottles and can provide them (see “Feeding Equipment”
For help with feeding, we recommend call our Feeding Equipment hotline 0425 784 13, or refer Feeding Equipment and Help and Your New Baby Has a Cleft.
Treatment
Cleft patients may require many years of treatment. Treatments needed vary depending on the cleft condition.
Lip and palate repair
- Cleft lip is usually repaired at 3-4 months
- Cleft palate is usually repaired at 6-12 months of age
- 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
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.
Remember
- Cleft lip and palate is a condition with a range of severity. Not all cleft patients will need all treatments mentioned above. Not all cleft patients will require all surgeries
- The cleft type and severity of the cleft do not always determine the degree of difficulty in treatment. Outcomes for the cleft patient are dependant on many factors
- Cleft clinics in Victoria are located at Royal Children’s Hospital and Monash Medical Centre. Cleft clinics treat cleft patients across the range of treatments needed. Australia has some of the best medical professionals in the world
- Lots of support is available – you are not alone in dealing with your child’s cleft
Some documents you may find useful:
Social Issues, Self Esteem and Bullying
Evelyn Culnane is an Education Advisor with the Royal Children’s Hospital Education Institute. Evelyn provides support to students who are patients of the RCH and has a child of her own who was born with a unilateral cleft lip and palate. Evelyn is Educational Consultant for CleftPALS Victoria and is happy to chat to you about issues of education, kids’ self esteem and bullying. Email evelyn.culnane@rch.org.au or call 9322 5118 (Mon, Tues, Thurs).
Other useful resources can be found at www.sofweb.vic.edu.au/wellbeing/safeschools/bullying and www.bullyingnoway.com.au.
You can also contact the Cleft Coordinators at the following hospitals for professional advice:
- Royal Children’s Hospital: cleft coordinator on tel 9345 6582
- Monash Medical Centre: tel 9594 2380
We are volunteers, not medical professionals. Information on this site is not a substitute for professional advice and no responsibility is accepted by CleftPALS.
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