Diagnosis

Dealing with diagnosis

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.

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.

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, Perinatal Anxiety & Depression Australia Helpline 1300 726 306 (Mon to Fri, 10am - 5pm AEST)

•  Just need someone to talk to?  try Lifeline 13 11 14 (24/7)

Online Support

Join us in our fun and supportive Facebook group

Diagnosis before birth

It can be very distressing when a problem is picked up at your baby’s scan.

A cleft lip, with or without cleft palate, can be detected on ultrasound, usually at the 20 week anatomy scan.  A cleft palate with intact lip is not able to be detected from a scan.  Around half the cleft affected babies that we meet at CleftPALS have had their cleft detected at an ultrasound.  If you have been told in a scan than your baby has a cleft lip and possibly palate, it’s natural to be frightened, confused and anxious.

1.  As you read through this site and look on-line for other information, please remember that the internet is a scary place when you’re worried and confused!  There are a range of health problems and surgeries that can be associated with clefts - your child may have some of them, but almost certainly won’t have all of them.  Many children who are born with a cleft need just one or two surgeries and little further medical intervention. 

2.  Once your baby’s cleft has been detected, your hospital / doctor / obstetrician will offer you information and support.  You may be offered further testing such as amniocentesis to check for further anomalies.  While most cleft babies do not have genetic or chromosomal problems, a very small proportion do - whether or not to have further testing is entirely your decision.

3.  You may decide to talk to friends and family immediately, or hold off until you have come to terms with the diagnosis. You will probably find that family and friends will offer wonderful reassurance and comfort.  Those who don’t deal well with problems may be distant, ask for reassurance from you or try to blame someone or something for what’s happening.  Some people will surprise you with their level of support.

4.  The Perth Cleft Lip and Palate Unit Coordinator will contact you to organise your first appointment and meet the surgeon who will repair your child’s cleft. If at any stage you have questions or are unsure of the next step you can always call the hospital for guidance.

5.  Contact us.  CleftPALS can put you in touch with a contact parent whose child has a similar condition or who lives near you if you would like to have some personal contact.  You can attend events to meet other cleft children and families.

6.  Prepare for the arrival of your baby.  Let your birthing hospital know your baby will have a cleft, and make sure they are prepared to deal with any possible complications that may arise.  Talk to CleftPALS about feeding equipment and feeding options.  Make sure you take some special bottles with you for the birth – you can order these from the CleftPALS Website.

Diagnosis after birth

It can be very distressing when your new baby arrives and a problem is detected.

If your baby has a cleft lip, it will be noticed immediately and your baby’s palate will be checked.  A cleft palate (intact lip) should be noticed at birth but occasionally slips through and is not spotted for a few days, often following difficulty with feeding.  Around half the cleft affected babies that we meet at CleftPALS have had their cleft picked up at scanning.

1.  As you read through this site and look on-line for other information, please remember that the internet is a scary place when you’re worried and confused!  There are a range of health problems and surgeries that can be associated with clefts - your child may have some of them, but almost certainly won’t have all of them.  Many children who are born with a cleft need just one or two surgeries and little further medical intervention. 

2.  Once your baby’s cleft has been detected, your hospital / doctor / obstetrician will offer you information and support.  You will probably be offered further testing to check for further anomalies.  While most cleft babies do not have genetic or chromosomal problems, a very small proportion do.

3.  Feeding is often an immediate challenge for cleft babies.  A cleft lip only baby with an intact palate may be able to breastfeed with advice and assistance.  A cleft palate baby will probably not be able to breastfeed, and special bottles will required.  For help with feeding, we recommend:

•        Talk to your birth hospital and pediatrician (check that they are experienced in feeding cleft babies)

•        Call the Cleft Lip and Palate Unit and ask for a referral

•        Contact Us for supplies and support

4.  You may want to let friends and family know that your baby has a cleft lip / palate.  You will probably find that family and friends will offer wonderful reassurance and comfort.  Those who don’t deal well with problems may be distant, ask for reassurance from you or try to blame someone or something for what’s happening.  Some people will surprise you with their level of support. It can be hard to find the words.  Try not to let your joy at your lovely baby’s arrival be clouded by the cleft; remember the cleft is something that can be repaired.

5.  The Cleft Lip and Palate Unit will contact you to organise your first appointment and meet the surgeon who will repair your child’s cleft.  If your child was born with a cleft palate your child may be required to go to Perth Hospital where further testing may be done, and you will learn about feeding your child and caring for his or her cleft.

If at any stage you have questions or are unsure of the next step you can always call the hospital for guidance. 

More help if you need it

If you are struggling, please remember – you don’t have to do this alone! For assistance contact:

·         Your GP

·         Your Maternal Child Health nurse (through your local council)

·         PANDA, Perinatal Anxiety & Depression Australia Helpline 1300 726 306 (Mon to Fri, 10am-5pm AEST)

·         Parenting help centers can assist with sleep.  Ngala runs day stay and residential support, (08) 9368 9368 or 1800 111 546 (country) (8am-8pm every day).  Your MCH nurse will be able to suggest other similar services

·         Lifeline 13 11 14 (24/7)

·         CleftPALS WA We can put you in touch with a contact parent whose child has a similar condition or who lives near you if you would like personal contact.  You can also attend events to meet other cleft children and families.  We’d love to hear from you.  We are volunteers, mainly parents of cleft kids, and have been through this ourselves.  Please give us a call on 0416 232 156.  The sharing helps

·         The Cleft Lip and Palate Unit Coordinator