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Cleft Palate: What Parents Need to Know
With cases of cleft palate on the rise among children, experts weigh in about what parents should expect.
More and more babies in the United States are being born with cleft lip and/or cleft palate. Oral clefts are genetic conditions in which the roof of the mouth fails to fuse properly during early fetal development.
Despite the growing incidence of oral clefts, these defects can be successfully repaired, but it is crucial that parents-to-be and parents of newborns diagnosed with such conditions take a proactive role in devising their child’s treatment plan, say physicians at the Johns Hopkins Children’s Center, which sees more than 320 patients a year.
“While doctors have been successfully ridding children of these disfiguring birth abnormalities for decades, parents should understand that repairing a cleft palate or a cleft lip is anything but a routine procedure, nor is it a purely cosmetic procedure” says Craig Vander Kolk, M.D., co-director of the Cleft & Craniofacial Clinic at the Johns Hopkins Children’s Center.
Every newborn with cleft palate/cleft lip should undergo a thorough evaluation by a team of specialists, including a geneticist, an ENT specialist, a hearing specialist, an orthodontist and a plastic surgeon. Later on, as the infant grows, he or she should also be evaluated by a speech pathologist to ensure proper speech development.
“Cleft palate or cleft lip requires an interdisciplinary approach because it usually involves more than one system, and therefore requires multiple areas of expertise,” explains Richard Redett, M.D., co-director of the Cleft & Craniofacial Clinic at the Children’s Center.
Doctors should consider a genetic workup for newborns with cleft lip/cleft palate because these conditions can occur either as standalone disorders or as symptoms signaling a complex genetic syndrome that might affect multiple systems and organs. At the Johns Hopkins Children’s Center, each newly diagnosed baby is seen by a multi-disciplinary team of specialists in a single day to determine the exact nature of the cleft condition and to draft a treatment plan for the parents.
Vander Kolk and Redett suggest the following tips for future and expecting parents.
Before and during pregnancy:
Cleft palate and cleft lip can be either genetic (inherited) or occur as spontaneous mutation during pregnancy. If you have family members who were born with cleft palate, inquire about available genetic tests to determine whether you and your spouse carry genes that might cause cleft lip and cleft palate or related syndromes.
Cleft palate and cleft lip can be detected in-utero (before birth). If an ultrasound reveals your baby has these conditions, a treatment plan can be developed even before the child is born.
Pregnant women should not smoke or expose themselves to second-hand smoke. Previous research indicates that smoking increases a woman’s risk of having a baby with cleft lip or cleft palate.
Women who plan to become pregnant in the near future should take folic acid (400 micrograms per day), because recent studies show that folic acid might decrease the risk of cleft palate and cleft lip. Folic acid has already been shown to decrease the risk of neural tube defects such as spina bifida.
Do your research. When choosing a hospital, ask your doctor how long the hospital has been treating children with oral clefts.
Discuss the treatment plan in thorough detail. Ask how many specialists will see the baby.
Ask what follow-up will be needed after the surgery.
Cleft palate and cleft lip, once thought to occur in one in 700 to one in 1,000 newborns, now occur in one out of 590 babies, making these the most common birth defects in the United States, according to the CDC report. Some 6,800 babies are born every year with cleft lip, cleft palate or both.
To learn more about the repair of oral clefts, please visit the Johns Hopkins Cleft & Craniofacial Clinic.
Additional Information about Cleft Lip and Palate at Johns Hopkins Medicine
- Hear why one Baltimore family chose Johns Hopkins for the treatment of their children's cleft lip. Watch to learn more.
- When Guy was born with a bilateral cleft lip and palate, Felicia and Gavin didn’t know what to expect. Read their testimonial of Guy’s experience with the cleft clinic at Johns Hopkins