Well friends, with all that data searching, information is what I got - lot's of it - and I thought I'd share some of my key learnings here for your benefit as well:
- One of the first things I learned, which surprised me, is that a cleft lip and/or a cleft palate is one of the most common birth defects in the US - about 1 in 700 babies are born with it. We always see those commercials for the children in other countries who have clefts, but we really don't ever hear about its true prevalence here in our own country. Interesting.
- The causes of clefts don't seem to be very well understood yet. There is a general agreement that it could be genetic/hereditary, but can also be caused by environmental factors such as lack of folic acid, smoking, drinking, and exposure to certain chemicals during the early stages of fetal development. For many of us, though, none of these circumstances apply, as is my case, so obviously there are still some causes unknown, or I guess it just can happen by chance.
- Cleft lip surgery generally takes place between 3-6 months of age, and cleft palate around 9-12 months, but the exact timing all depends on each individual child's circumstances.
- There are a number of approaches and/or devices that can be used in preparation for the various surgeries, and each doctor seems to have their own philosophy on what is best. The devices range from something that is surgically implanted into the baby's mouth, to another that fits like a retainer and is taped into place, while some teams just use taping on its own without the aid of a device, and others don't use anything. The purpose of any of these methods is to close the gap of the cleft as much as possible prior to surgery, which is believed by many doctors to allow for better results and reduces the need for additional touch-up surgeries.
- Our surgeon uses the retainer-type device, which is called Nasoalveolar molding (NAM). It sort of looks like head-gear for a baby, and from what I have read from other parents who have had to use it on their babies, it is a bitch to use but totally worth it in the long run. Usually a baby will get fitted for it within their first few weeks of life, and will then wear it up until the gap is closed sufficiently enough for surgery. Be warned: I'm sure you will see many posts from me about the NAM once we get started with it.
So there you have it - I just dumped a TON of information on you, but hopefully you will find it informative, especially for those families who have or are expecting a child with a cleft and are looking for clarity on all of the information out there. To that end, for those looking for further info I highly recommend checking out www.cleftline.org, which contains plenty of educational material as well as a listing of cleft teams across the country.