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Can a cleft be repaired?

A cleft lip and/or palate are birth defects which can be addressed with correctivesurgery. So don't despair, your child's appearance will be greatly improved andtheir quality of life can be as normal as any child not born with the condition.

When will the corrective surgery be carried out?

The surgical repair of the cleft lip is carried out at about three to four monthsof age. The whole emphasis in repairing the lip is on the muscle repair, in orderto mould the distorted premaxilla back into its proper position. Lip surgery canbe 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 anddifferent 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 beforethe child attends school.

Sometimes the child's nose may be too broad or flat and the plastic surgeon willsometimes do a corrective rhinoplasty in the teenage years. So too any finalrefinements to the lip may be carried out at this stage.

For how long will my child remain under the care of the cleft team?

The plastic surgeon begins the repair work at about three months of age and yourchild is not finally discharged until he or she reaches the age of 18 to 20 years.This lengthy period of care makes it all the more necessary that they are underthe combined care of a co-ordinated team.

Why was my child born with a cleft?

The cause or causes of your child being born with a cleft are not clearlyunderstood. Research is being undertaken at home and abroad to identify the causeor causes. It is known that it occurs in the early weeks of pregnancy when theface is being formed. In some cases there is a hereditary factor but it can appearin a family with no known history of the defect. It occurs in approximately 1 inevery 700 babies born in Ireland.

If I have more children, what is the likelihood that they too will have a cleft?

There is a 5% chance of your next baby having a cleft - that is a 1 in 20 chance.Remember, the incidence was originally 1 in 700. If another child is born with acleft, the likelihood increases further.

What am I feeling?

The birth of a child with a cleft represents a crisis for parents. You mayexperience a range of emotions such as shock, numbness, and grief. It takes timefor the reality of the situation to sink in. You may feel that life has dealt youa very hard blow and you may feel angry for this reason. But grief and sorrow willbe 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 yourchild's birth.

You may also fear that your child's condition is the worst that it could possibly

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be, and this comes from a fear of the unknown. Guilt may hit you, a sense that itis somehow your fault, that there is some hereditary factor involved, or someextra care you could have taken during the pregnancy.

Resolution will be the last stage you will reach, when you come to accept thereality and are ready to face the future. Remember, you will not be alone infeeling such a range of emotions or indeed not knowing exactly how you feel.

How will I cope?

Try not to feel alone. You and your partner should support one another, and availof the support and advice of the cleft team and others where given. Remember, theCleft Lip and Palate Association exists for these very reasons.

Take one day at a time. Thinking too far ahead can immobilize you. Learn about thecondition, 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 sodoing 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 andyour positive attitude and outlook. You are the first and greatest influence onyour child's life, and that is the greatest responsibility you will ever carry.

How will my child cope with teasing?

Children are very curious people. They ask direct questions, and if givenreasonable answers, think nothing more about it. If you give your child areasonable 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 encouragemixing 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 acceptyour child as they would any other.

How will my other children react to the new cleft baby?

Because a cleft lip is such an obvious physical condition, your other children mayat first be scared and apprehensive. They may also become jealous of the amount oftime and attention you are giving to the new arrival. For that reason, you need toreassure them and make certain you give them ample time and affection.

They will naturally be curious, and you ought to answer their questions and makesure that they too learn along with you about the condition. Young children oftenaccept news more readily than adults and their acceptance and understanding may

surprise you. Let them help, and praise them for their efforts. Older children canhelp in more practical ways and take some of the pressure off you, even by way ofthe small things which need doing.

Will my child's speech be affected?

Children with cleft lip only rarely have speech problems associated with thecleft. A cleft palate, on the other hand, can affect speech and languagedevelopment. The problems are generally with articulation or the presence of nasaltones. Speech and language therapy may be required, and regular recalls to monitorthe child's speech are essential.

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The child should first be seen by a speech and language therapist at six monthsand be reviewed regularly. The importance of parents helping with speech andlanguage development cannot be over emphasized.

Will my child's hearing be affected?

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 notalways happen, but your child's hearing should be checked at approximately 12months of age.

Poor hearing can adversely affect your child's speech. Treatment of hearingproblems involves day case surgery, usually resulting in the insertion of grommetswhich help to drain fluid and allow air into the middle ear, resulting in thehearing being brought back up to normal. Grommets usually extrude themselves. Theassociated hearing difficulties should disappear after the first few years.

Are there implications for my child's intellectual development and schooling?

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. Thereis 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 intheir language development. This is something that the speech and languagetherapist monitors and address in the course of the therapy that the child willreceive.

You may have a niggling worry as your child approaches schoolgoing age that ateacher may misinterpret the cleft condition and any associated speech problem. Ifthis is your worry, a talk with the teacher ought to allay your fears. To thisend, we have produced a Handout for Teachers, which is available on this website.You can also read the article, Back to School, by Doctor Kathy Kapp-Simon, also

available on this website.

What are the consequences for my child's teeth growth and development?

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 ofsecond teeth may be removed. For some children simple orthodontic treatmentinvolving 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, andthe expanded position of the dental arch is maintained for 6 to 12 months by whichtime 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, usuallyby the age of 13 years, full orthodontic alignment can start with the use of fixedbraces.

Can I breastfeed my baby? What are the feeding implications for my baby?

Many children with a cleft feed without difficulty, so you should notautomatically expect problems. Breastfeeding will depend on the type of cleft. Ifyou have decided prior to the birth to breastfeed, you should try. If you areunsuccessful, bottle feeding with expressed milk may be tried. The use of a breastpump may facilitate in this respect.

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In normal feeding the upper lip does relatively little work, so babies with acleft lip only do not usually experience a difficulty. Babies with a cleft palateare more likely to experience feeding difficulties, because, without a properlyfunctioning palate, it is difficult to gain and maintain proper suction. An extrahole in the teat can be made or the existing hole enlarged. Special teats may berecommended, or alternatively special squeezable bottles so that you can moreeasily control the milk flow.

There may be a problem with liquids coming down the nose, and there may also betemporary feeding difficulties following repair of the palate.

Remember, there is no one solution to feeding for all cleft babies, and it mayoften be a case of trial and error. Seek the advice of a nurse, or the speech andlanguage therapist in the Cleft Team.

Can my baby use a dummy, or a soother?

Babies with a cleft can usually cope with a dummy, although its use is bestdeferred until after the palate repair is fully healed. If your baby has PierreRobin syndrome the use of a dummy can actually encourage the sucking reflex.

I was born with a cleft. What is the likelihood that my baby will be born with acleft?

The chances of a parent who was born with a cleft having a baby with a cleft risesto approximately seven in one hundred. Remember, the incidence in the populationin general is one in seven hundred.

Will my child have other health problems?

Clefts can be associated with a number of syndromes, but unless your child isdiagnosed as having an associated syndrome, there is no reason to believe that heor she will not otherwise be perfectly healthy.

Velocardiofacial Syndrome is the syndrome most commonly associated with a cleftpalate, most usually cleft of the soft palate. The cleft may be complete,incomplete, or submucus. There are up to one hundred and eighty four otheranomalies commonly associated with velocardiofacial syndrome. The incidence ofvelocardiofacial syndrome is approximately 1 in 2000 of live births, and it occursin 8% of cleft palate cases.

Another related syndrome is Pierre Robin Syndrome, which is a common variation ofsimple cleft palate. The baby has a combination of cleft palate, a smallunderdeveloped 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 passedon. The incidence is one child in every thirty thousand.

As a consequence of having a cleft, however, your child may have hearing problemsrequiring treatment with grommets, or speech concerns because of the cleft to thepalate. Speech therapy is required in many instances.

If your question is not here, please notify us so that we can address it, at infoat cleft.ie.

This information is available from www.cleft.ie