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From Research to Reality

To understand her son’s birth defect, a mother makes an emotional and scientific journey

Katherine E. Willmore

A Plethora of Clefts

2011-09MacroWillmoreFB.jpgClick to Enlarge ImageNow that the worry has subsided, the tears have dried, and the guilt has been sufficiently suppressed, I’m able to look at Max’s developmental mishap through scientist-colored glasses. I’d forgotten how fascinating the intricacies of development can be. Considering the wild, choreographed steps required for proper facial development, I find it surprising that there aren’t more missteps.

The variety of possible facial clefts is mind boggling. A child can be born with a cleft lip, a cleft palate or both. I discovered soon after Max’s birth that when most people hear “cleft,” they seem to imagine only a cleft lip (what was once more commonly called a harelip), and particularly one that involves a large, gaping hole. Before Max’s surgery, when I told people that he had a cleft palate, the response was a nearly universal “You would never know.” This was a comfort—because we weren’t usually dangling our kid upside down for people to see inside his mouth, his cleft was not normally on display.

A cleft lip is characterized, as the name suggests, by a separation of the upper lip. This can be a small groove in the upper lip, or a large gap that extends from the nostril through the lip and the bone of the upper jaw where the two front teeth are housed. Depending on the severity of the cleft, the infant’s ability to suckle may be impaired, and speech and dental complications may arise.

Cleft palate, on the other hand, involves a gap in the roof of the mouth. To understand where a cleft lip ends and a cleft palate begins, feel the roof of your mouth with your tongue. Just behind your front teeth there is a small ridge. This marks approximately where the primary palate, found at the front of the mouth, meets with the secondary palate, found at the back of the mouth. When a cleft lip affects the bone of the upper jaw, it extends only as far as this ridge and disrupts only the primary palate. In contrast, a cleft palate affects only the secondary palate, behind the ridge. It can extend from the uvula (the dangly thing at the back of your mouth) all the way to this ridge; Max had this type of cleft. It can involve just a small cleft in the uvula, a small slit along the middle of the palate, or a gap that extends the entire width and depth of the mouth. In all cases, a cleft palate disrupts the usual separation between the mouth and the nasal passages. The result is an inability to suckle, as well as problems with speech. More entertaining (or distressing, depending on your point of view) consequences are extreme snoring and the ability to squeeze food through your nose—a fine party trick.

To add to the complexity, the different clefts can mix and match like sweater-set coordinates. The seemingly endless combinations can lead to the impression that facial clefts occur randomly. In fact, there are few structures involved in facial clefting, and with an understanding of the development of the face, the variety becomes predictable.

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