It’s 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 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, and around half have not.
1. As you read through this site and look online for other information, please remember that the internet is a scary place when you’re worried and confused! There are lots of problems and surgeries associated with clefts, and your child will probably have some of them, but almost certainly won’t have all of them. Many kids with clefts need just one or two surgeries and little further medical intervention. Nothing you did caused this, and it can be fixed. Kids born with clefts lead normal, happy lives.
2. Once your baby’s cleft has been spotted, your hospital / doctor / obstetrician should offer you information and support. You will probably be offered further testing to check for further anomalies. Most cleft babies do not have genetic or chromosomal problems but 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 almost certainly not be able to breastfeed, and special bottles will required. More information here. For help with feeding, we recommend
- Call our Feeding Equipment hotline 0425 784 136 for special bottles and teats and advice
- Talk to your birth hospital, pediatrician, MCH nurse (check that they are experienced in feeding cleft babies)
- Call the Royal Children’s Hospital, Melbourne, and ask for the Cleft Clinic or a speech pathologist / feeding expert
- Specialist speech patholologist Julie Reid will help with advice for bottle feeding difficulty – call her on 0409 329 205
- For tips on breastfeeding a cleft lip baby, you are welcome to contact CleftPALS member Susannah – through the Facebook site, or call the Feeding Hotline number 0425 784 136
4. You will need to let friends and family know that your baby has a cleft lip / palate.
You will probably find that family and friends who are usually supportive on other issues, 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 fixed.
5. You will want to get in contact with a cleft surgeon.
In the public system, the Royal Children’s Hospital in Melbourne have a cleft team with lots of resources and help available. Contact Cleft Coordinator, Stephanie Ward on 9345 6582. Cleft surgery is also done at Monash Medical Centre; call 9594 2380.
If you prefer to talk to a private surgeon, your obstetrician, doctors or the RCH cleft team can help you out with some contacts.
Your child may need multiple surgeries and followup visits, so make sure you are comfortable with the surgeon you choose.
Evelyn says: our obstetrician provided us with a highly recommended surgeon’s contact details and arranged an immediate appointment with him. She assured us that our surgeon was very experienced in dealing with children with clefts. She then spoke to us at length about the cleft condition.
The next day, we visited our plastic surgeon and spent a good hour with him. He initially ran us through all the possible procedures we could reasonably experience with the worst cleft related conditions which enabled us to fully understand the commitment and their durations. We were reassured by before/after photos and were able to ask questions. We felt comfortable with him immediately and understood that we could have gone elsewhere if we needed another surgeon, discussed the pros/cons of going public vs private care.
Susannah says: we rang the cleft team at the RCH and met with the cleft coordinator and head surgeon. We were reassured by their experience and patience in answering our 10,000 questions. We liked that they have all the resources of a large hospital on site, and that they manage the baby’s care in a team approach with surgeons, dentists, speech therapists, pediatricians, hearing people all working together. We thought about talking to people in the private system but decided the level of care we would get from the RCH couldn’t be matched.
Our surgeon through the RCH was very supportive. He came to our birthing hospital the day after our baby was born to check his cleft, told us what a lovely baby we had and let us know the end result would be fine.
6. Contact CleftPALS.
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.
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 our Support Hotline 0425 784 130. The sharing helps.
7. 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
- Your Maternal Child Health nurses (through your local council)
- PANDA, the Post and Ante Natal Depression Association
- Parenting help centres can assist with sleep. Tweddle runs day stay and residential support. Your MCH nurse will be able to suggest other similar services.
- For help with feeding, try the RCH Cleft Clinic
- Just need someone to talk to? try Lifeline.