Cleft lip and palate- long term care

After the first three or four months the surgical team will begin to do a multiple surgeries over the next 16 years to provide the baby with a fully functioning lip, nose and palate that looks a cosmetically good as possible as an adult. The lip gets repaired first around 3-4 months followed by the initial palate repair at 9-12 months. At 6-8 years they take bone often from the child's hip and use it to create some of the jaw and palate by bone grafting. Then between 8-18 years multiple revisions including surgery of the nose are done to create a normal appearing face.

So why wait those first couple of months? The first reason is to let the baby grow both for better healing but also because older children have less risks under anesthesia. In addition the team harnesses the growth that is occurring during that time to make the surgery easier and better. By using a technique called Presurgical nasoalveolar molding- PNAM- trying saying that 3 times quickly!) where a very specialized orthodontist produces molds that guide the ongoing growth of the baby the mouth can be molded to allow an easier and safer surgery when it is done. The molds are created with plastic and individuadized to each baby with modifications as time goes on. In addition the cleft lips are taped together to get the skin to stretch so that it is more flexible when the surgery is done. The molds are held in place by cushioned wires that rest in the babies nose ( kinda like the wire used in braces and retainers). These molds also go a long way to straightening the nose and lips up into the positions they will be when the surgery is done.

Many folks find that their babies have already had the surgery when they get them from China. One of the reasons for this is because the children are usually older when adopted and the need to be able to feed is critical for growth. In fact due to how frequently cleft lip and palate occurs in Asians perhaps the best surgeons worldwide are in China- one of the speakers at my conference mentioned to me the Shanghai 9th Peoples Hospital where one surgeon has probably done 10,000 of these surgeries! But with so many children across the country not all kids get the surgery and will have variable results. Even though the first couple of surgeries have been done future surgeries will probably be needed as the child's face continues to grow into and through the teen years. I want to emphasize that your cleft lip child no matter how good they look now should be seen and followed by a cleft lips specialist in your region.

Cleft lips/palate - how they happen and what to do early

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/

What does echocardiagram mean that I got in the referral?

Some of you adopting a child with a heart condition receive a copy of a heart echocardiagram when you get your referral. These are not always accurate and sometimes it is not clear whether these were done before or after the first surgery that may have been done in China.To understand the results before deciding on whether to accept the referral, you need to have a pediatric cardiologist  review it and interpret it for you.
If any adoptive family does not have access to a pediatric cardiologist to interpret this data,  I now have access to a group of Pediatric Cardiologists who are willing to look these over and give me their opinion anonymously. I will then send the interpretation back to you. Just contact me with a copy of the report. My email is: tcraff@comcast.net