Published: June 22, 2011
Updated: June 22, 2011
By Jeni Baker
In decades past it was not unusual for a child with a cleft lip and palate to undergo 10 or more procedures before age 12. “Our primary goal will always be to achieve the very best result possible,” he says. “However, it is no longer necessary or reasonable to have a child go through so many steps.”
For procedures that are necessary, the Duke cleft team creates a clinical plan for each child according to the most up-to-date protocols. Less surgery means less recovery time, less exposure to anesthesia, and fewer related risks.
“We strive with every patient to consolidate and coordinate procedures and to avoid the need for revisions,” Marcus says. “Revisions are almost never as good as a perfect first surgery, so when we do anything, we do it to last a lifetime.”
Over the past eight years, the Duke cleft team has not had to revise a cleft palate repair, and only rarely must revise a cleft lip repair.
Since the program began offering an innovative presurgical orthopaedic therapy, outcomes are better than ever. The process -- called nasoalveolar molding, or NAM -- greatly facilitates the primary lip, palate, and nose repair many cleft patients undergo.
Craniofacial orthodontist Pedro E. Santiago, DMD, helped develop the technique in the mid-1990s and brought it Duke two years ago, making Duke’s program one of few in the United States to offer NAM and the Southeast’s most experienced NAM program.
When NAM is appropriate and desired by a family, Santiago’s team sees infants at about a week old. He evaluates the cleft and makes an impression of the baby’s upper jaw, a three-minute procedure that doesn’t require anesthesia. The impression is used to make an acrylic molding plate -- similar to an orthodontic retainer -- that is inserted and then adjusted weekly for three to four months to narrow the cleft.
Unlike other presurgical orthopaedic techniques, NAM brings the nose up and lengthens the skin between the nostrils, laying the groundwork for optimal outcomes when surgeons perform the primary nose and lip surgeries. “Lip repair alone cannot solve the stigma of the cleft nasal deformity,” says Santiago.
“Once the lip and bony segments are close together, we add a nasal extension to the plate to mold the deformed nasal cartilages,” he explains. “This improves nasolabial symmetry and balance, and is critical to facial aesthetics.”
It takes few days for families to get used to the plate, but “by week two, mom and dad are experts at managing it,” Santiago says. “Babies aren’t crazy about it at first, but it doesn’t hurt them, they get used to it, and it’s pretty easy to spot problems. If a particularly bothersome issue should arise, parents can always take the plate out while we make adjustments.”
Some children with clefts aren’t candidates for NAM -- but their outcomes are also good, says Marcus. Regardless of a child’s age or condition, “Duke offers options for every scenario,” adds Santiago. “We like to meet the child, meet the family, and discuss their unique situation, goals for treatment, and resources, so that we can develop a comprehensive and realistic plan of action that’s appropriate for that family.”
As children grow up, they continue to see their same surgical team for monitoring, an important practice that provides long-term consistency of care as patient needs evolve.
“We stick with our patients throughout their lives, and those relationships really grow,” Marcus says. “Of all the things I do in medicine, caring for kids with clefts is probably the most rewarding. There is no greater sense of meaning than to look at a child with a cleft and to know that you have an opportunity to help him or her be like other children.”
Santiago agrees. “It makes my life more meaningful to be able to get to know these patients and families, and make such an important impact on their lives.”