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Cleft Lip and Palate |
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If a scan has shown that your baby has a cleft lip (and/or palate), one of our doctors will have explained this finding to you and this leaflet aims to give basic information about the condition. If you would like to discuss things further with one of us we will be happy to talk to you.
During the early stages of pregnancy separate areas of the face and head develop individually and then join together. If certain parts do not join properly the result is a 'cleft' or separation which can affect either the upper lip or the palate (roof of the mouth), or both. Most often if the condition is picked up on ultrasound it will involve the lip, it is not always possible to tell you whether or not the palate is involved. The cleft may be present on one side of the mouth, (unilateral) or both (bilateral), either way the presence of a cleft does not necessarily mean that any part is actually missing.
Relatively common, about one in every 700 babies is born with a cleft lip or palate.
Although we know how a cleft occurs, we do not fully understand why it happens. There is however nothing anyone could have done to prevent it and it is not because of something you have done in your pregnancy and so you should not feel guilty.
Most babies with a cleft will be normal in every other way. You will have noticed that the doctor scanned the whole of the baby very thoroughly to check for any other physical abnormalities and if any were found we will have informed you of this already. In a few cases a cleft lip or palate may be one feature of a more serious condition such as a chromosomal abnormality (Trisomy 18 or 13).
A detailed ultrasound scan can help to detect chromosome abnormalities but you will also be offered a test such as cordocentesis to confirm whether the baby's chromosomes are normal. This test carries a small risk of miscarriage (about 1%). If the chromosomes are normal then usually not further tests or treatment are necessary until after the baby is born.
Treatment and care for babies and children with cleft lip and palate is best given by a team of specialists working together and you will be referred to the local cleft lip and palate team. The cleft is repaired by a plastic surgeon, but input from a dental specialist, paediatrician and speech and feeding therapist may also be necessary. The team will examine your baby and work out a plan to suit his or her individual needs. Below is a general guide to the sort of treatment a child with a cleft lip or palate may need to undergo, but remember that because every baby is different, the extent of treatment or surgery required will depend not only on the severity of the cleft but also on your own preferences or your child's specific requirements. The aims of the treatment are a normal appearance, good speech and hearing, and healthy teeth. These aims would be met as far as possible before school age.
The timing of any operations will of course vary but the surgeon will usually repair a cleft lip quite early (within the first few months). For babies with a cleft palate, the operation is usually carried out at around six months of age. In either case your child will be followed up closely and it may be necessary to make minor adjustments, to improve appearance or speech by a further operation before your child starts school. In some cases a part of the bone supporting the teeth is also affected by the cleft and so a dental surgeon may also be involved in monitoring the development of the child's teeth. lf any of the bone is missing another operation can be carried out before the second teeth come through.
Most often yes. Babies with a cleft lip and/or palate have the same ability to suck and feed as other babies but differences in the structure of the mouth mean that it is sometimes more difficult for them to get enough milk. There are many ways to help babies with feeding, including bottles adapted especially for this purpose and this will not stop you from giving your baby breast milk if you wish to. Occasionally a dentist may be involved in helping feeding by fitting a small plastic plate to the palate.
Since movement of the palate is important for certain sounds, some children with a cleft palate develop difficulties with speech. However, with early attention from the speech therapist, most of these problems can be overcome.
There is an approximately 5% risk of the same thing happening in any future pregnancy. Occasionally a cleft can be due to a recognised genetic condition, if this is suspected you will have the opportunity to see a genetic counsellor, who will discuss any family history with you and the chances of the condition happening again. You will be able to have scans in any pregnancy to check for cleft lip or palate, although it is not possible to completely exclude a cleft palate on ultrasound.
We know that the diagnosis of a cleft lip or palate will have been a shock for you, and it may help to talk to someone who has had a similar experience to yourself. The Cleft Lip and Palate Association (CLAPA) are happy to be contacted for support or advice. You will also be given the opportunity to meet a specialist cleft lip and palate team either now or at any time later in your pregnancy if you would like to know more about the condition and about what will happen once the baby is born. We advise that you see the specialist teams so that you can have complete information on the scope and availability of treatment. However, we are aware that some parents still feel that they do not wish to continue with the pregnancy. If this is the case you will have the chance to talk further with one of our doctors. |
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