"IS MY baby OK?" Every parent wants a perfect child, and once the sex of a newborn is known, the next concern centers on the child's health.
For parents of babies born with a cleft lip, cleft palate or both, the shock of seeing the infant for the first time can be a heartbreak. One in every 700 children is born with a cleft of the lip and/or palate.
A cleft lip is especially unnerving because it's such an obvious physical imperfection. The cleft may vary from a slight notching of the upper lip to a complete separation that extends through the upper gum ridge and into the nostril. It may be unilateral (involving one side of the lip) or bilateral (a cleft on both the right and left sides of the lip).
A cleft palate is an opening in the roof of the mouth and may involve: 1. the hard palate (the hard bony portion behind the teeth), or 2. the soft palate that lies behind the hard palate toward the throat, or 3. both the hard and soft palates.
"At one time, parents were totally dependent on the plastic surgeon for whatever information and support they got," said Dr. Emma K. Herrod, medical director of the J. Sutton Regan Cleft Palate Foundation Clinic, headquartered in the Rath Building. It is named for the surgeon who, a half-century ago, was a founder of the clinic that pioneered cleft treatment in surgery, orthodontics and speech education.
The clinic, which serves children with cleft lips/palates and related defects, uses the pediatric dental clinic at Children's Hospital. Medical members of the clinic team include a plastic surgeon, pediatrician and otolaryngologist (ear, nose and throat specialist). Dental members are the pediatric dentist, orthodontist, prosthodontist and dental hygienist. Other are speech pathologists, a genetic consultant, audiologist and nurses.
Kathie Slon, a registered nurse and clinic coordinator, said the clinic offers diagnostic, evaluation, referral and support services from birth to age 21. Patients usually are referred by plastic surgeons, pediatricians or, in the case of older children, by schools.
"Our goal is to guide parents through the systems needed for a child's treatment because parents are so overwhelmed by this initially," Mrs. Slon said.
Within the past decade, a local parents' support group was formed for families of children with clefts.
"Basically, we've all been through the same thing," said Marcia Kester, president of the Parents Association for Children With Cleft Lip/Palate, which is associated with the clinic.
Mrs. Kester and Mrs. Slon strive to establish immediate contact with parents of newborns with clefts.
"We've found that the earlier the visit, the better. We give them literature and even have a photo album of before-and-after pictures of cleft-lip babies," Mrs. Kester added.
In addition to meetings, the parents have a family picnic in the summer and organized a support group for teen-agers. There are 160 families on the mailing list.
"The support group has helped parents cope with comments that they and their children get from other adults and peers," Dr. Herrod said. "And the kids are learning how to deal with their own attitudes and those of their peers as well."