Basically, Max was born with a hole in his mouth. The process of fusing did not finish in the womb. The hole doesn't hurt, and will be fixed through several surgeries.
No single cause of cleft lip and palate has been identified, however it is believed that the majority of these issues appear to be due to a combination of inherited facotrs (genes) in combination with certain environmental factors. Clefting occurs very early in the pregnancy, and represents a problem over which a mother has no control. Cleft palate is one of the most common of all birth defects, and seems to appear in all racial groups. However, the combination of cleft lip and palate seems to appear most commonly in Asians. Approximately one out of every 700 to 750 infants born in the U.S. has a cleft lip and/or palate.
Feeding, of course, is one of the major concerns with cleft lip/palate babies. According to his growth numbers, Max has figured out how to get enough food in his belly. He is exhibiting good numbers, although by American standards he is in about the 10th percentile of growth.
We will travel with a variety of nipples and bottles that are available for a baby with cleft lip/palate. In general, babies with cleft need to be in a semi-upright position, and need to be burped more frequently. We'll figure all that out soon, hopefully.
Max will need a series of surgeries. Childrens Hospital in Seattle will be the place we'll get it fixed. We will meet with a craniofacial anomalies team that includes representatives from medicine, speech and hearing. dentistry, and psychosocial departments.
Usually, the cleft lip will be fixed first.
Sometimes it can be done in one stage, but often two separate surgeries are needed. Usually, the hospital stay is just one night, and Max will go home with some stiff gloves on his hands so he won't mess with the stiches.
Palatal surgery is done between eight and eighteen months of age, and usually involves a hospital stay of one to three days. They'll fix the soft palate first, which involves some incisions around the outside of the soft palate and stretching the skin to fuse the two sections. Hard palate surgery could involve some bone grafting, and might have to wait until hishead has stopped growing. Since we don't know the extent of his cleft lip/palate, a lot of this will obviously be decided once he's home.
Children with cleft lip and palates have increased risks of having ear infections, and therefore it's quite common for them to get ear tubes during the first two surgeries. Also, we'll need to stay on top of Max's hearing as that is often problematic for kids with cleft lip/palates. Once he starts speaking, we'll also keep track of his speech development, and because of the palate issues, Max might need some speech therapy.
Hopefully that answers some of your questions. Of course I'll keep you all posted on the next steps.
:)
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