There is a million thoughts that run through your head when you are told your baby has a cleft. Did I cause it? Could it have been prevented? How badly will my baby be affected? The list goes on. I don’t think you can even know everything about the condition your baby has but in this next post I will tell you a little about clefts and what I have learnt.
1 in 600-700 babies are born with some type of cleft. Montana was born with a Unilateral cleft lip and complete palate. This means the cleft affects one side of her lip and palate, in her case the left side of both lip and palate. There is also a Bilateral Cleft Lip and Palate which means the cleft affects both sides of the lip and most times the roof of the babies mouth is completely missing. Some babies can be born with a cleft lip only meaning the palate is not affected or a cleft palate only meaning the lip is notcleft of the palate can involve the hard or soft palate only or a complete cleft affects both hard and soft palate. A gum notch can also be involved with a cleft lip and this usually only affects part of the gum at the front of the mouth.
If your baby only has a cleft lip or in some cases a cleft of the hard palate they may be able to breastfeed. If your baby has a complete unilateral or bilateral palate it is very unlikely they are able to breastfeed. Feeding can be quite hard for most cleft babies and specialty feeding bottles are required. Like most things babies will take to certain teats. In hospital Montana wouldn’t take to the Haberman Specialty feeding teat. This was the only teat the hospital knew about for cleft babies. Since she wouldn’t suck that that teat she ended up having a NGT for feeding. We then found the Chu Chu Cleft Teat. Once we received one of those Montana took to it straight away and has fed great ever since. I have also tried the Pigeon Cleft Teat and the Dr Browns Specialty feeding system which I had to order from American as we do not have them available in Australia yet.
There is no known reason of why a cleft is formed. It happens so early on in pregnancy some mothers to be do not even know they are pregnant. The face is split into two parts, the left and the right. Between 6-9 weeks gestation the two sides fuse together to make the lip and palate in some cases this does not happen therefor causing a cleft.
Most research suggests that a cleft is not hereditary and won’t be carried on through the family, however 1 in 3 clefts are hereditary and have had some family history of a cleft. As far as I know we do not have any family history and Montana’s cleft just didn’t fuse together properly during my pregnancy.
There are also quite a few cleft related syndromes that can come with having a cleft. Thankfully as far as I know Montana does not have any other condition beside the cleft. Hearing lost can also be caused by having a cleft as the fluid does not drain from the ears. Once grommets are inserted this usually fixes the hearing. Sometimes permanent hearing loss can occur. Audiology testing is done when the baby is just a few weeks old to determine any type of hearing loss.
Most people find out at their 20 week morphology scan if their baby has a cleft lip or palate. They can then be prepared with feeding equipment, appointments and information about clefts. Even though I didn’t find out until Montana was born I’m lucky that she was only born with a Cleft Lip and Palate. It can be fixed and won’t affect her long term. There are babies out there that have it much worse that what we have been faced with. Montana has a beautiful big smile and it just makes her that much more unique!
By Casey Hancock