Just back from a Great Plastic Surgery conference at the local tertiary referral center (internationally known) where the brightest of the brightest get to take on cases that scare the heebie jeebieis out of the rest of the plastic surgery world. So one of the topics was cleft lip and palate and since 1/400 Asians babies have this as compared to 1/2000 African American there are plenty of Chinese babies out there with it. This will take a couple of posts so lets start with how it happens and what to do early on.
The nose and mouth develop early in pregnancy- as early as 6 weeks. One fold of skin on each side of the nose fuses to create the lip If one side doesn't fuse then there is a hole becomes a one sided cleft lip. If both sides don't then their is a bilateral cleft lip. The part inside the top of the mouth is the hard and soft palate. You can feel this on yourself by putting a finger in and pressing on the top of your mouth which is hard. If you move it backwards you get to the soft palate if you keep going you will gag yourself and puke so don't do it.
The soft and hard palate develop later than the lip and in a more complex manner. Initially the tongue is up where this hard and soft palate is but then it moves down lower leaving a space between the sides. The body then fills in this space by growing inward and fusing the two sides creating the hard palate. If the tongue doesn't get out of the way (like what occurs in children with small jaws) then the sides can't grow in and fuse to create the palate.
One of the jobs of the palate is to create a separate passage for food and air so that we can chew while breathing and one of the first issues for these new babies is to make sure they can breath without choking while they eat. They must have the calories to grow but if eating causes them to choke then they won't eat and will starve.
Preventing suffocation is a big deal so sometimes the rules of newborn care are modified to protect the baby. The first one is the "back to sleep" advice given parents to prevents Sudden infant death syndrome (SIDS). In cleft palate babies with small jaws sleeping on their belly uses gravity to help keep things open which helps in 7 out of 10 newborns. Sometimes the tongue is too big and blocks off the airway - sewing or tacking the tongue to the babies lower lip with a suture helps to keep it out of the way. As the nose and throat grows eventually the tongue isn't a problem and the suture can be removed- usually around 6 months of age.
The next challenge is nutrition. In the normal child the tongue can push up against the hard palate creating a seal that allows the tongue to produce suction that pulls the milk or formula into the mouth. This can't occur in cleft palate babies but in cleft lip babies, since the palate is still there the suction can be produced to allow feeding. The special feeding nipples for cleft palate babies deliver a higher flow that doesn't depend on suction to get the job done. The formula is pressed into the mouth by the person doing the feeding. There are multiple types. Enfamil cleft palate nurser (produced by Mead-Johnson) is squeezed. The Haberman bottle ( by Medela) has a barrel reservoir that is squeezed with three flow rates.
The marker for success with feeeding is how long does it take to feed and most importantly is the baby gaining weight. Common problems and their solutions are 1) nasal regurgitation- I hate this even as an adult particularly while laughing- burp the baby more frequently 2) mild spilling over lower lip- sit them more upright 3) increase air swallowing- alter the flow rate so they aren't gulping as much 4) feeding longer than 30 minutes- make the feeding more frequent 5) too much or little weight gain- get more calorie concentrated formula
The experts recommended that parents not be afraid to mix and match feeding devices and practice practice practice to see what works best for their baby. Good Luck!
Here are some resources http://www.cleftline.org/
http://www.cleftadvocate.org/
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