Chapter 5: How will we cope?

Everyone worries whether their baby will be normal. When an anomaly is found, there is, at first, a numbed shock as your worst fears are confirmed; then there is apprehension at the prospect of long and complicated treatment. Angry feelings about blame may then be directed towards a spouse, the doctors, or even the baby. Mothers, particularly, often feel guilty, believing that they have somehow caused the cleft. Many secretly suffer for their early feelings of revulsion about the cleft or for their wishes to reject the baby. While these feelings may persist for some time, you soon become involved in the business of caring for and loving your baby. Then, overprotection rather then rejection, may become a problem.

Some friends and relatives may be uneasy about visiting you and the baby. Their expressions of sympathy may be awkward and they are bound to be full of questions. You will be expected to be an instant expert on the condition and its treatment. Some parents find it useful to forewarn visitors about the baby's condition and appearance, and to add that treatment is already underway. Just when you are most in need of emotional support from your family, you may find yourself having to give it to them: grandparents, in particular, have difficulty accepting the news, so that the new parents sense an obligation to speak and act in a way that protects their own parents' feelings.

Sometimes, another parent who has experienced the same problems (and survived!) can be of more help than family or friends. Cleft-PALS is `a national voluntary organization, comprising parents and professionals interested in children born with a cleft condition'. Cleft-PALS has branches in all states and its members have a wealth of practical information and experience in how to meet the often conflicting demands of other children, treatment, work and running a home.

Children with a cleft are going to ask questions, some of which will be very difficult. It will be tempting to answer in a way that causes least pain at the time, for example, "No darling, I won't take you to hospital ever again!" In the longer term, misleading or evasive replies can undermine the child's trust in you or leave him or her prey to vivid fantasies, even more frightening than the answer you should have given. Before answering, it is worth trying to find out what is behind the question. What is the child really worried about? Many questions that seem to be about facts or technical aspects of the cleft have more to do with the child's feeling of being different or fear of being separated from parents. Once it is clear what is being asked, it is much easier to give a simple and honest reply.

Part of your child's treatment will include operations in hospital. Just as there have been advances in surgical techniques, so, too, going to hospital is less stressful for a child than it once was. Parents are encouraged to be present with the child and involved in day-to-day care as much as possible. This can greatly reduce the child's fear and ease pain. Prior to admission there are hospital preparation programmes that have been shown to decrease distress in hospital and on returning home. Hospital stays are much briefer these days. Whenever possible toddlers are not admitted because they are particularly prone to be upset by separation from parents and home.

When your child reaches adolescence, he or she questions things previously accepted and thinks in different ways about the future, jobs, kissing, marriage and having a family. The cleft condition may resurface as an issue because peer conformity and appearance are so important. Some teenagers respond by becoming shy and withdrawn while others tend to overcompensate. If, because of the cleft, parents have been overprotective, or the child has remained excessively dependent on them, the normal moving-away from a family that occurs at this age may be more difficult. This can be expressed in reluctance to comply with treatment and challenges like "Whose lip is it anyway?"

Brothers and sisters are often thought to suffer because of parents having to devote so much time and energy to the affected child. Also the expression of sibling rivalry may be prevented, for fear of causing further harm. For many children, however, the additional responsibility and required helpfulness in caring for a sibling results in a more resilient personality.

Children's self-esteem, sense of being able to influence their own destiny and ability to socialize develop from very early in life. Studies have shown that children with cleft palates are as well adjusted as other children and are not more prone to later emotional disturbance. Their educational, work, marriage and social prospects are good. A supportive and accepting outlook by parents is, however, paramount in ensuring normal development.

Professional guidance is available through the Clinic, should you wish to discuss this or other aspects of your child's progress.

Further Information

To obtain further information on "Cleft Lip and Palate: A Parent's Guide", please contact Belinda Liston:

Belina Liston
Cleft Palate Clinic Coordinator
The Cleft Palate Clinic
The Children's Hospital at Westmead
Locked Bag 4001
WESTMEAD NSW 2145
AUSTRALIA
T: + 61 2 9845 2079
F: + 61 2 9845 2078
E: BelindaS4@chw.edu.au