It’s very distressing when a problem is picked up at your baby’s scan.
Cleft lip with or without cleft palate can be spotted at ultrasound, usually at the 20 week anomaly 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 picked up at scanning, and around half have not. 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 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 such as amniocentesis to check for further anomalies. Most cleft babies do not have genetic or chromosomal problems but a very small proportion do.
Evelyn, Jarrah’s mum, says: We discovered Jarrah had a cleft at our 21 week ultrasound. He had Choroid Plexus Cysts on his brain which often indicate the presence of chromosomal abnormalities such as Edwards Syndrome. Our obstetrician and sonographer suggested that we might like to go ahead with an amniocentesis. We agreed that this would be the best course of action, despite the risks which they detailed to us. Initially, we did not want to find out the gender of our baby however given the circumstances we wanted to know. We were then informed that our baby was a boy![Jarrah’s amniocentesis results were fine and Jarrah is a healthy little boy with no associated problems].
Susannah, Leo’s mum says: We were very upset at our 20 week scan when they spotted our baby’s cleft lip. We then had further and more detailed anomaly scans and they offered amniocentesis to check for further problems. We decided against having an amnio, as we were worried about possible harm to the baby. Our nuchal results at the earlier scan had been good which helped reassure us. It made the rest of the pregnancy a bit stressful, wondering if there might be more problems other than the cleft, but in the end he arrived just fine.
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 your heads around the issue.
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.
Susannah says: I showed my family the information we got from CleftPALS and the RCH and that helped them understand. I also bought a children’s book to read to my nephews – though I found the children much more accepting of the idea that our baby would look a bit different, than some of the adults were! the hugs from my friends really helped. A few family members didn’t react as well as we would have liked, and that was painful to deal with.
Evelyn says: We spoke to our immediate family upon diagnosis, and then when we were ready we emailed/spoke to friends and other family members. This enabled us to better inform our friends/family of what having a child with a cleft would mean for us, both short and long term. This was a positive message with its key purpose simply to avoid any negative reactions or misunderstanding. It also enabled us to communicate the information in our own way.
4. 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, Royal Children’s Hospital, 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, and discussed continuing with the pregnancy given our knowledge that our baby would have a cleft.
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, with all our son’s information in one file. 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 from the RCH was amazing. 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.
5. 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.
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 get these from the CleftPALS Feeding Equipment Hotline (most cleft babies are not able to breastfeed or use normal bottles, and the hospital may not have appropriate bottles on hand.)
Evelyn says: We bought the appropriate feeding (and sterilising) equipment from CleftPALS and had it ready in our pregnancy bag for when Jarrah arrived.
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
- 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.
8. Occasionally, there is a discussion around termination for a foetus diagnosed with cleft lip / palate.
Obviously, decisions regarding termination are deeply personal.
Individuals born with cleft lip / palate have the same potential as individuals born without cleft lip / palate, to lead normal, happy and healthy lives.