Chapter 6: How a Parent Support Group Can Help

Parents of babies born with any obvious deviation from the normal, such as a cleft lip and/or palate, will obviously experience a wide range of emotions. Some parents will be concerned about the future - How will the baby look after surgery? How many operations will be needed? Will the child be able to speak properly? How will family and friends feel about the child's appearance? The questions go on. Other parents will feel angry - Why did it happen to us? Some parents will feel guilty - What did I do wrong during the pregnancy? Some will feel inadequate or nervous with the baby - How will I cope with feeding and other people's questions and stares? Parents react in so many different ways. How could contact with other parents who have had a baby with a similar cleft possibly help? After 25 years of functioning as an Australia-wide parent support group, the members of Cleft-PALS, most of whom are parents, are convinced that sharing does help.

Parents of new babies born with clefts are usually asked by the staff of the maternity hospital if they would like to be visited by parents of a young child with a similar condition, whose cleft has already been repaired. Where possible, the type of cleft is matched exactly. In country areas, where matching may not be possible, the visiting parent would bring 'before and after surgery' photographs of a child with the same cleft type. An address or telephone number of a parent who has had experience with a similar cleft can be given to the new parents if they want to make contact.

The parents who visit the hospitals are known as 'contact parents'. They have been especially selected and have had some training on how to listen. Both, contact parents and many new parents who become members of Cleft-PALS, find that the most important result of the hospital visit is a feeling of relief. When new parents see and hear the normal, outgoing toddler whose cleft has been surgically repaired, many of their fears are put to rest. They are usually reassured when they see the photographs of this particular child before and after surgery and at various stages of his or her development.

The parents of the new baby may have already been referred to, and met, their child's plastic surgeon, or this may be a decision still to be made by the hospital staff. The contact parent does not give advice on which doctor to see or what treatment the baby will probably have. If the new parents are interested to hear about it, however, the contact parent will tell them a little about what happened with their own child - the age at which surgery was done, how the baby was fed, the age when he or she started to talk, and so on. This often gives new parents the opportunity to ask questions of another parent. It also paves the way for continuing contact with the contact parents, who will leave their telephone number and address, with an invitation to the new parents to get in touch at any time.

Feeding a baby with a cleft of the palate is sometimes not easy. New parents often benefit from discussing the various options with the contact parents, who have already tried various ways of getting the baby to drink milk, coping with their own frustrations and exhaustion during the early months, and dealing with a baby who is usually very slow and rather more colicky than other babies. For mothers who would like to breastfeed, it is particularly useful to talk to another mother who has succeeded. The baby with a cleft lip only or with a very small cleft of the palate may be breastfed. Other mothers, whose babies have a cleft of the soft palate, may choose to feed the baby with expressed milk using a squeeze bottle. Cleft-PALS supplies the soft polythene squeeze bottles for those mothers who are bottle-feeding their new baby.

Apart from all these practical issues, another benefit to new parents from a contact parent visit is the opportunity to air some very real, but perhaps not very acceptable, feelings at this early stage. The hospital and professional staff provide reassurance and important information to the parents, so it may seem unsuitable air feelings of shock, anger and confusion to them. It may be easier to express these emotions to other parents, who have experienced at least some of the same feelings. Once these feelings have been talked about, they are usually more easy to accept. It can be a great relief to realize that it is not unusual to have these feelings.

After the parents and baby have been visited in the maternity hospital they will receive a Cleft-PALS newsletter every two months. It contains informative material appropriate to different ages and stages for children with cleft conditions, for example, early speech development, hospitalization, beginning kindergarten or school, and orthodontic treatment. It also contains letters and comments from members all over Australia. This helps to keep parents in touch with issues and concerns relevant to their children. It also makes them feel part of a caring group of parents and professionals who can be contacted at any time should a problem or query arise.

The contact parent who has made a visit, or any member of the Cleft-PALS committee whose telephone number is on the newsletters and information sheets, can be rung at any time, not only when difficulties arise but also when parents just feel depressed and exhausted and need moral support, or to share their joy when things seem to be going well.

If you are a parent who did not receive a visit in the maternity hospital, or if you are experiencing difficulty with feeding your baby or just feel the need to talk to another parent, please contact Cleft-PALS, P.O. Box 475, Lane Cove NSW 2066. The telephone number is in the White Pages of the telephone book under 'Cleft Palate and Lip Society' in each State. This opportunity is available to all parents, whatever the age of your child, and, of course, to older children and adults with a cleft condition.

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