If you’ve just had a diagnosis of cleft, either at a scan or after your baby was born, it’s likely you’re full of questions and more than a few emotions! You’ve come to the right place.
What is a cleft lip and/or palate?
In early pregnancy, different parts of a baby’s face develop separately and then join together. If some parts do not join properly, the baby is born with a cleft.
A cleft lip can range from a little notch in the coloured part of the lip to a complete separation of the upper lip which can extend up and into the nose. A cleft palate is a gap in the roof of the mouth. Cleft lip and palate can occur separately or together.
Why did this happen?
There is no single cause of cleft lip and/or palate. In most cases, a cleft is caused by lots of different factors (including genetics and the environment) coming together in a way that usually can’t be predicted or prevented. It is very unlikely that your baby’s cleft is because of something you did or didn’t do.
Around one in 700 babies are born with a cleft around the world.
What will happen now?
You should be referred to a Cleft Team. These are teams of medical professionals, from surgeons to psychologists, who all specialise in treating cleft lip and/or palate. This should happen very soon after you’re first diagnosed. If it hasn’t happened yet, ask your obstetrician or midwife about getting a referral.
Included in this team will be at least one Cleft Nurse Specialist who looks after new and expectant parents and is the best person to go to with any questions or concerns you have.
Your baby will need surgery to repair the cleft, and may need further help with feeding and, later, speech and hearing.
Stories from Parents
Many parents of children with a cleft have written about their experiences of diagnosis, birth, surgery and beyond. They have shared these personal moments, from the hopeless to the triumphant, to help new and expectant parents prepare for their baby’s future.
Most of these stories begin with diagnosis, and in the majority of cases the parents had no idea their child would be affected.
If you take away one thing from our website, it should be that no matter your circumstances you aren’t alone. There are over many babies born with a cleft every year in Australia, and many of their parents join the CleftPALS Community to find others with similar experiences.
Contact CleftPALS and talk to another parent
CleftPALS will put you in touch with a contact parent whose child has a similar condition or who lives near you. You can attend events to meet other cleft children and families.
Susannah says: I loved seeing older cleft children and seeing what a cleft repair looks like, and talking to other parents about the emotional journey and getting practical tips on surgeries.
Evelyn says: We contacted CleftPALS and spoke to the feeding equipment coordinator and subsequently asked to be put in touch with a contact parent. Conversations with our contact parent and the parent pack provided by CleftPALS were incredibly useful. We felt that having the right information and hearing personal (positive) accounts from parents of cleft children, were just what we needed to hear and read about.
Ask for more help if you need it
If you are really struggling, please remember – you don’t have to do this alone! For assistance talk to
- Your sympathetic GP
- When your baby arrives you will meet your Maternal Child Health nurses (through your local council). You might want to get in touch before your baby’s birth too.
- PANDA, the Post and Ante Natal Depression Association
- Just need someone to talk to? try Lifeline.
We also have a private group for those who don’t want to use the public site.
-Email us for more information.