During the first 6 - 8 weeks invitro the usual fusion of the upper lip fails to occur, leaving a gap in the lip.  Severity of this differs from child to child from nothing more than a slight notch in the top lip, affecting either one side (uni-lateral) or both sides (bi-lateral) of the lip, to gap/s (or cleft, hence the name) that extend into the nasal cavity.  See also Cleft Palate.

How often are babies born with a Cleft Lip?

In Australia, it is recorded that this is one of the more common congenial defects in an unborn child, affecting one in approximately  600 - 700 babies.

Cleft lip/palate may be associated with other forms of disorder or intellectual disability, but it is not always the case.  Speak to your paediatrician if you are concerned about other aspects of your baby's health.

How did it happen? Did I do something wrong?

Arg, probably the worse thing that goes through the mother's mind at the discovery of the cleft is; did I do something wrong? Categorically, it can be assumed that you did nothing wrong, it is something that occurred to your child as they are one-in 700. That means they are pretty darn special.  See also What Happened?

Worldwide research has shown a variety of potential causes for cleft lip/palate, ranging from environmental through to genetic.  It is important to stress that it is not the 'fault' of either parent, especially the mother.  All parents with a newborn cleft-affected child should seek some form of genetic counselling, especially if intending to provide a brother or sister for the child. 

NB: Whilst increased folic intake lessens the chance of other birth defects it has not been proven to be a factor in reducing the possibility of cleft.

What do I say to others?

I feel that the more important question is: how do I react to what others say to me?  From personal experience and chats with other parents I can safely warn you that you will most likely encounter those that feel sorry for you and the baby, those that sprout all kinds of incorrect reasons as to why this occurred (watch out for the older relatives - they tend to have some doozies which can really anger or infuriate the parents if left to their own devices), and then you will encounter wonderful, supportive relatives/friends who love the baby just as it is.   I wish loads of the latter for you and less of the former!

As for what you should say to others about the cleft, it is something that you and your partner need to discuss, in quiet.  You should start by making sure any siblings have the chance to see the baby in your company. Explain simply to them that the baby's lip is not 'sore' but that it just didn't form properly when it was in mummy's tummy and that the baby will have some operations later to help fix the problem.  For others you should decide who should know more and who should just have a basic explanation of the facts.  Sadly, there will be those that can cope with the news and others that cannot. We discovered it to be a time of finding out who our 'real' friends were as those who couldn't be bothered to give us support or who saw it all as too 'weird' drifted out of our lives - thankfully.

If in doubt about what to say to family and friends I suggest you research on the links provided - see Links page. Also, CleftPALS have a simple but effective brochure that you can get by contacting me and letting me know you'd like one. 

What happens now?

You will be under the care of a team of specialists.  Your best step is to ask them questions, no matter how many times you feel like you're repeating yourself, until you have the whole process straight in your mind. 

Doctors and Specialist may speak double-dutch to you and this is when someone (like myself or other CleftPALS reps here in SA) are good to contact and invite over.  We can't tell you the right medical things to go through, but we can listen to your concerns and try to help you wade through the mountain of medical advice and paperwork you've been issued with. 

You might elect to become a member of CleftPALS, and I'd certainly encourage that, so that you don't feel isolated and so that your child has the opportunity of growing up with others who are 'just like them'.  Given enough participants and interest, we can arrange for a semi-regular meet up where the children can play together and parents can swap 'war stories' over their favourite poison (i.e. beer, cola or coffee etc)