FFC’s first Teen and Young Adult Forum

FFC’s first Teen and Young Adult Forum

“I’m excited to finally be with my ‘peeps,’” said Olivia Chartand of Ludlow, Massachusetts, at FFC’s first Teen and Young Adult Forum, held at Children’s Hospital Boston. Never before had she had the opportunity to meet others like her born with cleft lip and palate. The September 12 event gave teens and young adults a chance to discuss physical, social, and emotional aspects of growing up with cleft lip and palate. They covered topics related to final operations like pain management, nutrition and weight loss, and regaining abilities, such as playing the clarinet and returning to sports. They also talked about how a change in appearance can add to self-confidence but may not always be noticeable to others. Their conclusion about the best way to handle teasing was to ignore it. Overall, the group’s opinion was that individuals born with cleft lip and palate can be just as successful in life as anyone else. The informative and inspiring forum, featuring presentations by medical experts as well as small group discussions, attracted more than two dozen teens and family members. Coordinated by FFC board member Kara Jackman and planned with the help of teen volunteers, the Teen and Young Adult Forum was dedicated in memory of former FFC co-president Jane McDaid.

Available Options

The forum began with a series of short talks by Children’s Hospital medical staff, followed by questions and answers. First, dentist/orthodontist SivaVasudavan, MDSc, MPH, described the range of treatment options, including braces, replacement of missing teeth with implants or bridges, and jaw surgery. Teens, he said, have the opportunity to be more involved in the decision-making process than children do. “Decide what’s important to you,” he advised, “and find out what your options are. Consider time and costs when making your decision to go ahead with treatment.” He also said that delaying treatment until after college can be more inconvenient— requiring time off work—and may lead to problems with insurance coverage. I N Next, plastic surgeon John Mulliken, MD, talked about typical “touch-ups” on the nose, lip, and palate. Among these optional treatments are: augmenting tissue beneath the lip scar, making the Cupid’s bow (the double curve in the upper lip) symmetrical, narrowing the width of the nose, straightening the septum, and surgically creating a pharyngeal flap, if necessary, to improve hypernasal speech. Functional procedures, such as septum correction for a breathing problem, are covered by insurance, he noted, while final aesthetic procedures sometimes are not covered. In his presentation, psychiatrist Myron Belfer, MD, said teens and young adults should remember that personality is not dictated by outward appearance. He recalled how in his teens he was self-conscious about the size of his nose and early hair loss, but he compensated by running fast and joining the track and soccer teams. “The key to feeling good,” he said, “is knowing that you’ve accomplished something and that you’ve moved in a positive direction.” In considering later treatment, he suggested focusing on facial corrections that will bring satisfaction rather than on perfection. He also said to be wary of blaming facial differences as the source of all problems. Oral surgeon Bonnie Padwa, DMD, MD, covered procedures in her speciality including closure of oronasal fistula (abnormal opening between the nasal and oral cavities), jaw alignment, and tooth implants. She noted that treatment takes place after growth stops, which can be determined by X-rays of the hands and wrists, but is typically age 15 or 16 for girls and 17 or 18 for boys. She explained that orthognathic or jaw surgery (also known as LeFort I) may be done with rigid fixation or, less commonly, distraction osteogenesis. The latter procedure involves wearing a halo device for three to five weeks while the upper jaw is slowly advanced forward. In a dramatic series of before and after photos, Dr. Padwa showed how a canine tooth could be implanted in place of a missing incisor and how realigning the jaws can improve one’s profile.

More to Come

Thanks to the organizing committee and, in particular, Forum Coordinator Kara Jackman for planning such a successful event. Appreciation also goes to the Friends of Broadway for supporting the forum through their ticket sales, Whole Foods for supplying both breakfast and lunch during the event, and Jaguar Press for donating printing of the forum flyers. To reach a broader audience, FFC is in the process of producing a video based on information from the Teen and Young Adult Forum. (Thanks to the Southern family for sponsoring this.) Look for the video soon on our website! Also, teen and young adult participants were enthusiastic about future forums and online discussions. Watch for these as well as a workshop for parents in early 2010 on insurance coverage of surgical and dental procedures.