Dr

How do cleft lip and cleft palate occur?

Each of us had a cleft lip and cleft palate during the early weeks of development in our mother's womb. Normally, the tissues that form the palate and the upper lip come together in the middle and join (fuse). You can see the lines of fusion in the "Cupid's bow" under your own nose, and the ridge and pale line in the middle of your palate (the roof of your mouth). If your baby has a cleft, this fusion failed to happen when he or she was developing.

Why does fusion of the palate fail to happen?

In most cases, we simply don't know why lip and palate development go wrong. About 1 in 600 babies has a cleft lip or cleft palate.

Race and gender play a small role. Clefts are most common in Asians. They are less common in whites and least common in blacks. Girls are more often affected than boys.

In some families, clefts appear in several family members, so heredity is important. Sometimes substances in the environment, called teratogens, may be associated with clefts. But most babies with clefts have no known relatives with clefts and no known exposure to teratogens. A few babies with clefts also have other abnormalities. Your baby's doctor will look for these other abnormalities and tell you what he or she finds.

Did we do anything wrong?

No. We don't know what causes most clefts. Even if it is hereditary in your family, it is still not your fault. Every one of us carries abnormal genes that may show up in our children and grandchildren.

What happens now?

Remember that cleft lip and cleft palate are not dangerous to your child. Surgical repair of the cleft is done by choice. It can be done when the child is the right age and size and is in good enough general health to tolerate surgery.

Surgery is often done in several stages. Parents are usually eager to have at least the visible cleft lip repaired early, but this is often not done until the baby is 10 weeks old and weighs 10 pounds. Later, the cleft can be corrected by bringing together the tissues that should have fused before birth. Before the abnormality is corrected with surgery, a prosthesis, or artificial palate, ay be used to fill the gap in a cleft palate so that your baby can nurse and make the sounds that are the beginnings of speech.

Can my baby nurse?

Infants with only a cleft lip can usually breast-feed. Infants with only a cleft palate can usually breast-feed if the gap in the palate is narrow. Infants with both cleft lip and cleft palate seldom can breast-feed, but breast milk or formula can be fed with a soft plastic bottle and a crosscut nipple. This special nipple allows the milk to flow at a rate comfortable for the baby to swallow.

You can also use a device called a Lact-Aid, which will assist with breast-feeding. The device provides supplemental nutrition through a tube that is held next to the nipple during breast-feeding. (For more information on the Lact-Aid nursing device, contact: Lact-Aid International, Inc., P.O. Box 1066, Athens, TN 37371; 423-744-9090; www.lact-aid.com.)

How will my baby talk?

If your baby has only a cleft lip, your baby should not have any big problems in learning to talk. If your baby has a cleft palate, your baby may take a little longer than usual to learn to talk.

What other problems is my baby likely to have?

Children with clefts have ear infections more often than other children. The cleft allows fluid and germs to enter your child's ear more easily than normal. Many children require a special kind of surgery by an ear, nose and throat doctor. Tubes are put in the eardrum to drain fluid and stop some infections. All children with clefts need to have their ears checked regularly by their doctor.

Your child will also need to see a dentist often, because children with clefts tend to have more cavities and other dental problems than other children. Fluoride treatment, toothbrushing and careful dental care will be a big help.

You are naturally worried about your child's social growth. Infants and children with clefts may become withdrawn from both family and friends. It is very important to spend as much time as possible with your baby, cuddling, talking, hugging and so on. Later on, when your child is older and is making friends, it is important for you to make your home a safe place for your child. If you are worried about any problems with growth and making friends, you should talk to your doctor. You may also want to talk to a psychologist or a psychiatrist.

Who is going to help my child?

As soon as a cleft is diagnosed, your doctor will probably send you to a special medical team that will help you and your baby. The team may include plastic surgeons; speech pathologists (for problems with talking); audiologists (for problems with hearing); oral surgeons, orthodontists and dentists; ear, nose and throat specialists (for ear problems); psychologists, social workers and others.

If the cleft is found during an ultrasound exam before your baby is born, it may make you feel better to know that the team is ready to help. It is also helpful to meet other parents with children who have already had cleft repairs.

What is all this going to cost?

A lot. If you have health insurance, most of the costs should be covered. State and federal programs are available to help you, and some nonprofit organizations may help. See the sources listed in the box below.

Will it happen again to my next child?

It may, although chances are your next child will be normal. If cleft palate appears in a family, the risk of it happening again goes up. If several family members are affected, the risk of clefts is higher in all children born in the family. Talk about this with your doctor, who may send you to a genetic counselor.

Website:

Cleft Palate Foundation: E-mail: cleftline@aol.com
National Easter Seal Society: E-mail: www.easter-seals.org