Many people were surprised upon seeing Maverick's picture that he did not have any noticeable medical need. I think it was assumed that he would have cleft lip (picture on the right), which very often comes along with a cleft palate, but not always. From an external view, you cannot see Maverick's cleft palate. His mouth looks perfectly normal (much like the picture on the left).
But, if you take a glance inside of his mouth, you will see where the problem lies. Your palate is the roof of your mouth and is comprised of two parts, the hard palate (front of the mouth) and soft palate (to the throat). Cleft palate is when the sides of the palate did not fuse together in utero. Depending on how much of the cleft is present depends on what degree the cleft is. Maverick has 2nd degree cleft palate, which means his hard and soft palate need to be repaired. The cleft opens up directly to the nasal cavity.
Cleft is the most common birth defect, occurring in about 1 in 700 births. 25% of these children, have only cleft palate. Clefts are also more common in boys. Cleft typically is caused from one of these 3 factors: an inherited characteristic from parents (gene), environment, and genetic syndromes. About 30% of clefts are associated with a genetic syndrome. We are unsure which of these caused Maverick's cleft. We have heard that they are more common in Asian children due to environmental factors, but we cannot say with 100% certainty that is what caused his. We were also told that when only cleft palate is present, there is a higher chance of the child having a genetic syndrome. We do not know if that is the case with Maverick, as he has not had genetic testing done.
Typically cleft palates are repaired within the child's first year of life (the first surgery at least). Maverick will likely be close to age 4 before he has his repair surgery. This delay enhances many of the difficulties listed below.
Difficulties associated with cleft are:
-Difficulties feeding (this is why Maverick was fed through a tube down his nose into his throat as a baby).
-Ear Infections and hearing loss: Ear infections are common in children with cleft, therefore causing potential hearing loss.
-Speech and language delay: Think of how many times your tongue hits the roof of your mouth when you speak. If there is no palate, that can make word formation very difficult as muscles are not being worked in the mouth the way they should. Throw in potential hearing loss and you are looking at some major speech delays. Our Maverick will be 3 next month and from what we hear, is basically non-verbal. Apparently he can say 2 words. that only his foster mom can understand.
-Dental problems: Dental work may be needed later on due to mouth abnormalities
So, how do we go about repairing his cleft palate?
Once Maverick is home and we have spent some time in the attachment phase, we will take him to see a cleft team at one of our local hospitals. There, we will discuss having cleft repair surgery, where they will sew up the cleft. From what I understand, they will cut along the sides of the tissue that is currently there and pull it together to sew it up to close the palate. In addition to the cleft surgery, he will likely get tubes put into his ears, to help the fluid drain from his ears more effectively, therefore reducing the likeliness of ear infections.
This will take some time to heal, as you can imagine having the entire roof of your mouth reconstructed is painful, and he may need additional surgeries in the future, including bone grafts and orthodontic surgeries. We will know these things with time.
After he is healed from surgery, we will get him involved in intense speech therapy so that he can begin to communicate verbally. I see us using a lot of sign language for communication with him for a while, along with verbal communication on our part.
The great thing is that cleft repair surgeries are not super uncommon. We have connected with several families who have adopted children with clefts, and have walked the road before us. We know this will be hard on our little guy and will take patience on our part as well, but we are willing to fight through with him.
For a look at what a typical cleft palate surgery entails, you can check out this short video:
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