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FAQs About Cleft Palate and Craniofacial Disorders

What is cleft lip and cleft palate?
A cleft lip is an opening in the lip. A cleft palate is an opening in the roof of the mouth. Clefts result from incomplete development of the lip or palate while the baby is forming before birth. Babies' lips and palates develop separately during the first three months of pregnancy. In most cases, the left and right parts of the lip come together, or "fuse," creating the two vertical lines on the normal upper lip. In a similar way, the left and right parts of the palate come together to create a normal palate. The front-to-back line that can usually be seen along the roof of a normal mouth indicates where "fusion" occurred.

Why didn't my child's mouth fully develop?
Scientists have learned that there are many possible causes for clefts. Research is under way to discover more about these causes. But it was not your fault. Sometimes clefts are the result of a genetic predisposition or they can occur in combination with a syndrome.

How many children are born with clefts?
Cleft lip and/or palate is one of the most common problems found in newborn babies. Each year in the United States, over 5,000 babies are born with clefts. That is approximately one newborn in every 700 live births.

What can be done to help my child?
A cleft lip can usually be repaired in the first few months of life. A cleft palate can usually be repaired some months later. The exact timing of these repairs depends on the baby's health and considerations of his or her future development, as determined by the doctor who performs the surgery.

Can my child be fed properly?
Some children with clefts have very few or no problems feeding, however, others have more difficulty. The use of special bottles for babies and careful positioning can be helpful modifications. Your pediatrician will give you proper guidance.

Will my child's teeth grow properly?
If the cleft affects only the lip, the teeth may be affected. If the cleft affects the gums where the teeth grow, your child will probably need the care of dental specialists.

Will my child have trouble learning to speak?
If the cleft affects only the lip, speech problems are unlikely. However, many children with cleft palate need the help of a speech pathologist and some may need an additional operation to improve their speech. The goal is to help the child develop normal speech as soon as possible.

Will my child be mentally retarded?
There is no relationship between mental retardation and cleft lip and palate. However, if the cleft is part of a syndrome, learning ability is sometimes affected.

How can I pay for the treatment my child will need?
Health insurance will pay for all or part of the necessary care. Additional financial assistance may be available from an agency in your state that is supported by your tax dollars. Your family physician can direct you to the proper agency. For more information, you can call the Hagedorn Cleft Palate and Craniofacial Center at (516) 466-2990.

How do other parents feel when their child is born with a cleft?
It is natural for parents to feel upset at this time. Feelings of concern, anxiety, and grief are not unusual. Your family physician and the hospital staff members will guide you to a team of specialists who can provide you and your baby with the help you will need. You can also join our support group.

How can I tell relatives and friends about my child's cleft?
Most new parents feel that this is a difficult task. Although you may feel uncomfortable, it is important that you tell relatives and friends as soon as possible. Try to be as direct and honest as you can. Your baby is much more than their cleft, and everyone needs to remember that. If the people closest to you can visit while the mother and baby are still in the hospital, this is often helpful.

What is harelip?
The word "hare" refers to a rabbit, which has a natural indentation in the center of its lip. The term is rarely used by professionals, because it is inaccurate and insensitive. "Cleft lip" is the correct description of the condition.

Adapted from the Cleft Palate Foundation.