Expert insight on cleft lip and palate

Experts answer parents' questions about cleft lip and palate.

Learning that your baby has a cleft lip or palate can be upsetting, but these birth defects are quite common. They occur early in pregnancy when tissue from each side of the head grows together to form the face. If these tissues don’t completely join, the result is a cleft, or gap, on one or both sides of the upper lip. A cleft palate occurs when the tissue that forms the roof of the mouth doesn’t fully come together, leaving an opening between the mouth and nose.

It’s not clear what causes a cleft lip or palate, but a combination of genetic and environmental risk factors appears to be involved. “Although some forms of facial clefting run in families, the genetic risk is usually low,” says Dr. Ingrid Ganske, in the Cleft Lip and Palate Program at Boston Children’s Hospital. “Environmental factors that also slightly increase the chance of having a baby with a facial cleft include smoking, diabetes and some medications. But usually we cannot pinpoint a definite cause, and it’s important for parents to know they did nothing wrong.” Here, Ganske answers four more frequently asked questions about clefts.

How can we tell our relatives and friends about our baby’s cleft?

While the birth of a child is always exciting, this occasion can be overshadowed by anxiety and stress when you’re faced with telling others that your baby has a cleft lip or palate. However, this experience can also have positive benefits. Telling other people, especially close family and friends, provides an opportunity to receive much-needed emotional and practical support. Try to be as direct and honest as you can. Your child’s cleft and craniofacial care team can provide the answers to your own questions, which makes it easier to then answer the inevitable questions from others. Some families find relief in joining one of the many support groups for parents of and children with cleft lip and palate.

Will our child have difficulty speaking?

The palate plays a key role in creating sounds crucial for speech. The palate divides the oral and nasal airways and is responsible for directing sounds through the mouth when speaking. It’s important to repair the palate before your child starts to make meaningful speech, so that he or she can learn to use the palate properly. Even after cleft palate repair, kids can have difficulty making certain sounds and communicating clearly. Often, this can be improved with speech therapy, but sometimes it requires an additional procedure in the early school years.

Will our child need many surgeries?

The number of procedures your child needs will depend on the type of cleft and its severity. In infancy, operations focus on repairing the form of the lip, nose and palate. Some children also require additional procedures over the years to improve speech, hearing, dental growth, jaw positioning, scar revisions, nasal appearance and nasal breathing. For this reason, we follow children with clefts from infancy through adolescence to make sure they’re getting the care they need at the right time.

What research is being done for children with cleft lip and palate?

Researchers are hard at work trying to better understand the many issues related to clefts. These include possible genetic and environmental causes, their social and developmental effects, various repair techniques, and procedures to address speech, hearing and dental issues during childhood. By studying these and other aspects of cleft lip and cleft palate, we can provide optimal care for kids with these facial differences.

Learn more about the Cleft Lip and Palate Program at Boston Children’s.