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Index
About Cleft Lip & PalateCleft lip and palate comprises the fourth most common birth defect in the United States. One out of every 700 newborns are affected by cleft lip and/or palate. A cleft is a separation of the two sides of the lip. The separation often includes the bones of the upper jaw and/or the upper gum. A cleft palate is an opening in the roof of the mouth in which the two sides of the palate did not fuse or join together as the unborn baby was developing. Cleft lip and cleft palate can occur on one side (unilateral cleft lip and/or palate) or both sides (bilateral cleft lip and/or palate). Because the lip and the palate develop separately, it is possible for the child to have a cleft lip, a cleft palate, or both cleft lip and palate. Cleft lip and palate are congenital or birth defects which occur very early in pregnancy. The majority of clefts appear to be due to a combination of genes and environmental factors. The risks of recurrence of a cleft condition are dependent upon many factors which include the number of affected persons in the family, the closeness of affected relatives, the race and sex of all affected persons, and the severity of the clefts. Children born with a cleft frequently require a number of different types of services, e.g., surgery, dental/orthodontic care and speech therapy, which need to be provided in a co-ordinated manner over a period of years. This co-ordinated care is provided through interdisciplinary cleft palate/croniofacial teams -- professionals from a variety of health care disciplines who work together on the child's rehabilitation.
SUPPORT FOR PARENTS OF OLDER CHILDRENWe also offer the same friendly support to parents of older children, particularly at the time the child starts pre-school, or during the development of speech. If a child is experiencing difficulty with teasing at school, it can be of great benefit for the parent to talk it out with another parent. Similarly, at the end of orthodontic treatment, it helps to talk to another parent to find out how others manage teeth cleaning at school, and guard against loss or damage to an appliance. Also, prior to any hospitalisation, a parent can gain great comfort from talking with a parent who has had a similar experience.
Who Needs CleftPALSWe believe that all new parents should be offered the opportunity to meet another parent and so see a small child whose clefts have been repaired, whilst still in the maternity hospital. We feel this opportunity should be available irrespective of the type of cleft. We sometimes encounter hospital stall who dismiss the needs of the parent whose new baby has a minor cleft, particularly a cleft of the soft palate, with the comment "That's nothing to worry about, just a job for a surgeon....." In our experience, a congenital condition is never "nothing" to a new parent, particularly if it is their first child. We believe that if new parents are well informed and well supported in the first few days, these parents and their children are more likely to cope better in the years ahead. Sometimes, if the parents appear to be coping very well, hospital staff neglect to contact us. Again we stress that all parents should have the chance to talk with another parent, and establish the contact for use after they leave the maternity hospital.
How are Hospital Visits ArrangedUsually we are called by the paediatrician or nursery sister. We feel the visit should take place within the first two days. We attempt to match up the visiting child with the new-born baby, in term of cleft type, and specialist team, and to time the visit so that the baby's father can be present. This is particularly important with migrant families. At this visit our Contact Parent can go over the basic information already supplied, help the new parents understand any unfortunate reactions within their family, talk about feeding methods and availability of feeding equipment if required, help allay any understandable worries about the baby's first hospitalisation, and so on.
FeedingWe do not have any one policy on feeding techniques. We believe that this is something to be arranged between the new mother and the paediatrician, or nursery staff. However, in practice, we are frequently consulted, and advise that any babies born with a cleft of the lip only can successfully breastfed. For babies born with complete clefts and clefts of the soft palate, a polythene squeeze bottle is usually the most satisfactory alternative. We recommend the Queensland wide neck bottle and Chu-Chu Cleft Palate teats. There are a few other brands such as the Pigeon , Rosti and Meadjohnson which are also suitable to use with the Chu-Chu teats. The Nuk Cleft Palate or Lip teats are also available for parents who prefer them. Other teats can be suitable if cross-cut on the top, so the milk flow is faster. Cleft-PALS can advise new parent how to obtain adequate supplies of the required feeding equipment they decide on. We also recommend expressed breast milk as a happy compromise for those mothers disappointed that their baby's cleft precludes breast feeding. |
Send mail to cleftpal@powerup.com.au
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