| Please call us on 0425 784 130 to discuss any of your worries or for more information. The sharing helps.
Download CleftPALS recent publication Parent Information booklet here
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.
For help with feeding, please call our Feeding Equipment hotline 0425 784 130, or refer Feeding Equipment and Help and Your New Baby Has a Cleft.
Treatment
Treatments needed vary depending on the cleft condition. Information on treatment is available here.
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.
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.
|