The first thing to understand is that no matter what anyone tells you, this is not your fault. There is nothing that you did or did not do that caused your baby to have a cleft lip or cleft palate. There are very rare exceptions for this rule like the mother may have had a significant vitamin deficiency or may have been taking an anti-seizure medication before she knew she was pregnant. There is also the chance that either parent may be a carrier of a gene that might increase the risk of a child with a cleft but again that is not your fault. We do know that a cleft lip and palate occurs in one out of every 600 to 700 children born in the US.
We do not consider cleft lip and cleft palate as a birth deformity, because all of us (You, me, Brad Pitt and even Angelina Jolie), while in the womb, had a cleft as part of our embryologic development. Immediately after conception, the fetus starts as one cell. As the cells double in number, the head is made of 3 separate growths of tissue, the largest from the back that includes the head, brain, forehead, nose, center of the upper lip, and the front 4 teeth. A separate outgrowth from each side contains the ear, eye, cheek, upper jaw to the canine tooth, and the lower jaw to the midline. At approximately the fifth week of development, these three tissue blocks fuse together and fusion lines can be seen as the philtral column on our normal lips. Occasionally, amongst the billions of steps in fetal development, these tissue planes do not fuse all the way creating a unilateral or bilateral cleft.
We believe that children born with a cleft lip and cleft palate are just like everybody else but the normal process of development did not quite finish, and that it is our team’s opportunity and responsibility to finish this process. We take care of children born with clefts who grow up just like other kids. They play in soccer leagues, attend dance classes, go to preschool, learn to ride a bike, excel in school, go to prom, graduate from high school, attended college, fall in love, get married, and then go on to have children of their own.
You have probably noticed that there are many different types of cleft lip and cleft palate. Some terms to understand are unilateral which means one-sided and bilateral which means two-sided. Complete which means all the way through, and incomplete which means partially through. For example, a unilateral cleft lip involves only a portion of one-sided lip. A complete bilateral cleft lip involves both sides of the lip of the way through the lip up to the gums.
Classification of a cleft palate is a little bit different. Instead of saying a complete or incomplete cleft palate, we generally describe which tissues of the palate are involved. The anatomy of the palate involves the uvula, soft palate (including the muscles of the soft palate which elevated the palate for speech), and then the hard portion of the palate (roof) to just behind the gums, and the alveolar or gums segment. One additional term that we use to designate the severity of the cleft palate might be to describe it as being wide or extremely wide in the gap between the 2 sides of the cleft.
As a metaphor, I would like to use a parka with two zippers; when the top zipper is zipped to the top, your parka is effectively closed. There is a bottom zipper that allows you to partially open the jacket from the bottom. Then, if you think about it, there are an infinite number of variations of the position of the two zippers from completely closed to completely open. Think of the cleft palate like your parka with 1 zipper at the back of the uvula and the other zipper at the tip of the upper lip. If we open just the back half of the palate we would have a cleft palate involving the soft palate only. If we had the opening involving only half of the lip that would be called an incomplete cleft lip. Just like your parka with the two zippers, there is an infinite number of possibilities from completely closed to completely open.
Love your baby like there is no tomorrow and thank the powers that be that you have been blessed with such a beautiful perfect little life. When you get around to it, please call our team coor
