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Quick reference medical handouts used by Pediatric offices


For the Parents of Newborn Babies with Cleft Lip/Cleft Palate


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 Our Baby's Mouth Fully Develop?
We don't know the answer to this question, but it was not because you did something wrong. Sometimes clefts run in families, and in many cases, they rely on genetic predisposition. Some clefts occur in combination with other problems and are associated with a syndrome. It was not your fault.

Scientists have learned that there are many possible causes for clefts. Research is under way to discover more about these causes.

How Many Babies Are Born with Clefts?
Cleft lip and/or palate is one of the most common problems found in newborn babies. Each year in the US, over 5,000 babies are born with clefts. That is approximately one newborn in every 700 live births.

What Can Be Done to Help Our Baby?
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 Our Baby Be Fed Properly?
Some babies with clefts have very few or no problems feeding, while others have more difficulty. Use of special bottles and careful positioning of the baby are sometimes helpful modifications. Your pediatrician will give you proper guidance.

Will Our Baby's Teeth Grow Properly?
If the cleft affects only the lip, the teeth will probably not be affected. If the cleft affects the gums where the teeth grow, your baby will probably need the care of dental specialists.

Will Our Baby Have Trouble Learning to Talk?
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 Our Baby Be Mentally Retarded?
There is no relationship between mental retardation and cleft lip and palate. However, if the cleft is part of a cluster of other problems (a syndrome), learning ability is sometimes affected.

How Can We Pay for the Treatment Our Baby 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 which is supported by your tax dollars. Your family physician can direct you to the proper agency.

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.

How Can We Tell Our Relatives and Friends About the Baby'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 his or her 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. You may want to use this booklet to answer their questions.

I Have Heard the Word "Hare Lip." What Does It Mean?
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.

How Can I Get More Information?
The Cleft Palate Foundation (CPF) has a number of publications for parents of children with clefts, including booklets on infant feeding, on the child from birth to four years, on the school- aged child, and on genetics.

Modern care of a child born with a cleft lip or cleft palate is best managed by a team of medical, dental, speech, and other specialists. Ask your doctor to refer you to a "cleft palate team" in your community or state, or call the number listed below to help locate one.

CLEFTLINE: 1-800-24-CLEFT

 

As a reminder, this information should not be relied on as medical advice and is not intended to replace the advice of your child’s pediatrician. Please read our full disclaimer.

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