Friday, May 16, 2008

Kids and Clefts

"Oh, they can fix that pretty easily nowadays. Can't they?" Oral-facial clefts are birth anomalies that in the United States occur in about 1 in 1,000 births. They appear far more often in children in developing countries and especially in Asia and Latin America. Clefts occur when the tissues of the lip, maxilla, or palate of a fetus don't grow together early in pregnancy. There are varieties of clefts: cleft lip without a cleft palate; cleft palate without a cleft lip; cleft lip and cleft palate together. In addition, clefts can occur on one side of the mouth (unilateral clefting) or on both sides of the mouth (bilateral clefting). Doctors don't know exactly what causes this condition, but both genetic and environmental factors, especially smoking during pregnancy, are strong candidates. Most children born with cleft conditions in the U.S. have early reconstructive surgery within their first 6 to 10 months and related therapies can begin even earlier.

Severe (acute) cleft conditions are those in which the cleft is wider than usual or stretches further back into a child's mouth or skull, and these can include the absence of bone above the mouth or near the center of a child's face. This is the case with our son Henry, whose cleft condition is technically described as an acute bilateral cleft lip with cleft palate III. All clefts are as a different as the children who have them, but few are easy.

We belong to a wonderful email news group called adoptcleft, which has about 1,100 members who have adopted children with cleft conditions. Discussions among this group stay remarkably on topic and as a result we've learned a lot about the complex terrain that lies ahead. We know we may for many years be up to our ears in alligators with lip repair, hard and soft palate construction, bone grafting, potential bone morphogenetic protein (BMP) therapy, obturator fittings, ear canal tubes or replacement, dental prostheses, oral surgery, fistuli (maybe), orthodontia, speech therapy, and occupational therapy not to mention food and a strong odor often emanating from Henry's nose, plus a lot of drooling.

But we also know that children with very severe clefts can be among the least likely to succeed in orphanages. It takes much longer and much more effort for cleft children to drink or eat, and orphanage staff must often feed dozens of small children at each mealtime. This quickly leads to nutritional problems which leads to developmental issues which leads to failure to thrive. Later, even if through international or other assistance cleft children are able to receive lip repair in their orphanages they will still be unable to speak if they also have significant palate issues. In Henry's case, a medical team in China attempted to construct an upper lip by stretching surrounding tissue across his wide bilateral gap; the result has torn open. In March this year he was below the 10th percentile on length/height and not even within the percentile curve for weight on the standard CDC growth charts. There are a lot of things that are important and then there are things that truly matter. We simply placed little Henry in that second category, where he should be.