This one is about: The "Invisible" Cleft - What is a Sub-Mucous Cleft?
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by Joanne Green
We generally tend to classify clefts into two categories: Unilateral clefts and bilateral clefts. Unilateral clefts, of course, are clefts that affect only one side of the lip or palate. Most commonly they occur on the left side, but a right-sided unilateral cleft is far from rare. A bilateral cleft occurs on both sides. These can be complete or
incomplete, depending upon how far the cleft reaches across the affected tissue.
But there are other, less common types of clefts. For instance, there is a midline cleft, in which the cleft occurs in the midline of the face. This very rare cleft condition is almost always syndrome-related.
A parent contacted us over the internet with a question about another type of less common cleft condition called a submucous cleft. Her message read as follows:
"Our little boy, Ryan, is 5 and he has a submucous cleft palate. Do you have information on that? He definitely has a huge smile, but he is also microcephalic (small head). We adopted Ryan at birth. The palate was diagnosed at the age of two. Thanks."
We responded with the following information:
A submucous cleft is a cleft in which the surface tissue of the palate is intact but the musculature beneath the surface is not adequately or properly joined. Usually the only outward sign of the cleft is a bifid uvula (the punching bag in the back of the throat is split). However, it is often completely not detected at all until the child develops speech difficulties (at about age 2).
Even though there is not an actual hole between the oral and nasal cavities, the musculature does not work as it should, and sometimes the growth, particularly of the maxilla (upper jaw) and the alveolar ridge (upper gum line) is compromised.
The most significantly noticeable loss of function is in the soft palate. The soft palate is absolutely vital to proper speech development. It must be flexible enough to make the kinds of closures necessary to produce normal speech. If closure is not reached, air will escape into the nasal area because it is simply not blocked off at the back of the throat as it should be.
Kids with submucous clefts do not always have to have corrective surgery. Sometimes the cleft is not large enough to create insurmountable problems and the problems that the child experiences can be overcome with aggressive speech therapy and orthodontia. On the other hand, many times the surgery is necessary in order for the child to achieve the kind of control needed.
To my knowledge (admittedly limited), I am not aware of any syndrome that would include cleft palate and microcephaly. However, whenever there is more than one birth defect involved, a syndrome is suspected until ruled out. How much information do you have on Ryan's birth and biological history? The submucous cleft would have occurred around the 8th week of pregnancy. Was he drug exposed at all? That could have affected both palate formation and brain development. But exposure would have had to occur in the first trimester to affect the palate.
That would be my first guess, although, remember, I am not a doctor - just a mom who knows tons of other moms and dads of cleft-affected kids. It really doesn't matter how your child came to be yours, the issues concerning clefting are the same. In our cases, for those of us who adopted our children, there are more questions (concerning genetic backgrounds, prenatal histories, etc) but not necessarily fewer answers.
Ryan's mom responded by telling me that, in fact, most of this information was born out in Ryan. He did have a bifid uvula, and it was his speech that alerted them to a problem in the palate. Ryan is in fact enrolled in speech therapy and the decision as to whether or not the cleft will be surgically repaired is still up in the air.
The message here is for those parents whose infants were diagnosed with a cleft of the soft palate only, or a bifid uvula. Be sure your doctor looks closely at the palate to rule out a submucous cleft. You could save your child from a lot of frustration if the condition is detected before he struggles with speech.
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