Answers to questions about cleft lip and palate
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The surgical repair of the cleft lip is carried out at about three to four months of age. The whole emphasis in repairing the lip is on the muscle repair in order to mould the distorted premaxilla back into its proper position. Lip surgery can be revised at a later stage to improve the cosmetic appearance.
The repair of the palate is carried out between six and twelve months of age, usually around the tenth month. There are various types of operations and different techniques, but you need not be too concerned about the types or timing.
Often in the repair of a bilateral cleft lip, the tip of the nose is pulled down. This problem can be remedied by surgery at an appropriate time, preferable before the child attends school.
Sometimes the child’s nose may be too broad or flat and the plastic surgeon will sometimes do a corrective rhinoplasty in the teenage years. So too any final refinements to the lip may be carried out at this stage.
The cause or causes of your child being born with a cleft are not clearly understood. Research is being undertaken at home and abroad to identify the cause(s). It is known that it occurs in the early weeks of pregnancy when the face is being formed. In some cases there is a hereditary factor but it can appear in a family with no known history of the defect. It occurs in approximately 1 in every 700 babies born in Ireland.
The birth of a child with a cleft represents a crisis for parents. You may experience a range of emotions such as shock, numbness, and grief. It takes time for the reality of the situation to sink in. You may feel that life has dealt you a very hard blow and you may feel angry for this reason. But grief and sorrow will be the most intense emotions. The joy of your child’s birth may be soon forgotten , and it will be important that you hold on to the positive aspects of your child’s birth.
You may also fear that your child’s condition is the worst that it could possibly be, and this comes from a fear of the unknown. Guilt may hit you, a sense that it is somehow your fault, that there is some hereditary factor involved, or some extra care you could have taken during the pregnancy.
Resolution will be the last stage you will reach, when you come to accept the reality and are ready to face the future. Remember, you will not be alone in feeling such a range of emotions or indeed not knowing exactly how you feel.
Try not to feel alone. You and your partner should support one another, and avail of the support and advice of the cleft team and others where given. Remember, the Cleft Lip & Palate Association exists for these very reasons.
Take one day at a time. Thinking too far ahead can immobilize you. Learn about the condition, familiarize yourself with the terminology. Don’t let your health, emotional and physical, suffer as a result of the stress you may feel under. Express your emotions and don’t bottle it all up. You can gain strength from so doing and not feel it to be a sign of weakness.
Finally, and most importantly, how your child comes to feel about themselves, their self-esteem, and emotional and mental well-being will stem from you and your positive attitude and outlook. You are the first and greatest influence on your child’s life, and that is the greatest responsibility you will ever carry.
Children are very curious people. They ask direct questions, and if given reasonable answers think nothing more about it. If you give your child a reasonable explanation about the condition, one that they can tell their friends, then teasing and name calling can be reduced.
Do not deprive your child from social interaction, and indeed you should encourage mixing with other children from an early age so that your child can learn to handle different situations, and so that other children too may readily accept your child as they would any other.
Because a cleft lip is such an obvious physical condition, your other children may at first be scared and apprehensive. They may also become jealous of the amount of time and attention you are giving to the new arrival. For that reason, you need to reassure them and make certain you give them ample time and affection.
They will naturally be curious, and you ought to answer their questions and make sure that they too learn along with you about the condition. Young children often accept news more readily than adults and their acceptance and understanding may surprise you. Let them help and praise them for their efforts. Older children can help in more practical ways and take some of the pressure off you, even by way of the small things which need doing.
Children with cleft lip only rarely have speech problems associated with the cleft. A cleft palate, on the other hand, can affect speech and language development. The problems are generally with articulation or the presence of nasal tones. Speech and language therapy may be required, and regular recalls to monitor the child’s speech are essential.
The child should first be seen by a speech and language therapist at six months and be reviewed regularly. The importance of parents helping with speech and language development cannot be over emphasized.
When a child has a cleft lip only, hearing problems do not arise. However, when there is a cleft in the palate, there can be a hearing impairment. This does not always happen, but your child’s hearing should be checked at approximately 12 months of age.
Poor hearing can adversely affect your child’s speech. Treatment of hearing problems involves day case surgery, usually resulting in the insertion of grommets which help to drain fluid and allow air into the middle ear, resulting in the hearing being brought back up to normal. Grommets usually extrude themselves. The associated hearing difficulties should disappear after the first few years.
The presence of a cleft and any associated speech problem should not be interpreted as an indication of a learning disorder or slowness of learning. There is no co-relation between a child having a cleft and their intellectual ability.
There is the possibility that some children with cleft palate may lag slightly in their language development. This is something that the speech and language therapist monitors and address in the course of the therapy that the child will receive.
You may have a niggling worry as your child approaches school going age that a teacher may misinterpret the cleft condition and any associated speech problem. If this is your worry, a talk with the teacher ought to allay your fears. To this end, we have produced a Handout for Teachers which you can print out and hand to them.
Read the article Back to School by Dr. Kathy Kapp-Simon.
A full orthodontic assessment is carried out when your child is 6 to 7 years old. Any supernumerary teeth which interfere with the proper development or eruption of second teeth may be removed. For some children simple orthodontic treatment involving braces to straighten the teeth may be all that is necessary.
In most cases expansion of the maxilla and bone grafting is of great advantage. Expansion should start at about 9 to 10 years of age. Bone grafting follows, and the expanded position of the dental arch is maintained for 6 to 12 months by which time the graft should have taken successfully. The procedure should be completed by the age of 10 to 11 years. When all the permanent teeth have erupted, usually by the age of 13 years, full orthodontic alignment can start with the use of fixed braces.
Many children with a cleft feed without difficulty so you should not automatically expect problems. Breast feeding will depend on the type of cleft. If you have decided prior to the birth to breast feed, you should try. If you are unsuccessful, bottle feeding with expressed milk may be tried. The use of a breast pump may facilitate in this respect.
In normal feeding the upper lip does relatively little work so babies with a cleft lip only do not usually experience a difficulty. Babies with a cleft palate are more likely to experience feeding difficulties, because, without a properly functioning palate, it is difficult to gain and maintain proper suction. An extra hole in the teat can be made or the existing hole enlarged. Special teats may be recommended, or alternatively special squeezable bottles so that you can more easily control the milk flow.
There may be a problem with liquids coming down the nose, and there may also be temporary feeding difficulties following repair of the palate.
Remember, there is no one solution to feeding for all cleft babies, and it may often be a case of trial and error. Seek the advice of a nurse, or the speech and language therapist in the Cleft Team.
Clefts can be associated with a number of syndromes, but unless your child is diagnosed as having an associated syndrome, there is no reason to believe that he or she will not otherwise be perfectly healthy.
Velocardiofacial Syndrome (VCFS) is the syndrome most commonly associated with a cleft palate, most usually cleft of the soft palate. The cleft may be complete, incomplete, or submucus. There are up to 184 other anomalies commonly associated with VCFS. The incidence of VCFS is approximately 1:2000 of live births, and it occurs in 8% of cleft palate cases.
Another related syndrome is Pierre Robin Syndrome which is a common variation of simple cleft palate. The baby has a combination of cleft palate, a small underdeveloped lower jaw and a falling of the tongue into the back of the mouth. This never occurs in combination with cleft lip and is never inherited or passed on. The incidence is one child in every 30,000.
As a consequence of having a cleft, however, your child may have hearing problems requiring treatment with grommets, or speech concerns because of the cleft to the palate. Speech therapy is required in many instances.
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