Chapter 1: Introduction

The birth of a new baby can be a difficult time at best. It is a period of excitement and anticipation, full of joy, but also a time of concern and worry that the baby will be all right. The birth of a baby with a disability can be a devastating experience, particularly if the disability is as obvious as a cleft. When those worst fears are realized, parents may feel numbed by the event and have mixed feelings of shame, guilt, depression and anger that it should happen to them. These are normal reactions to a very stressful situation. Often the first advice they are given by friends and well-meaning hospital staff is inaccurate and this adds to their confusion. Some parents learn to cope with these feelings quickly but others may take longer to work through them. In all cases, there will be many questions that need to be answered.

This book was prepared for the parents of children with clefts by members of the Cleft Palate clinic at the Royal Alexandra Hospital for Children, Sydney. The Clinic has over thirty years experience and uses the latest medical and surgical techniques to ensure that the baby born with a cleft grows into a healthy child who will become a fit adult, able to take his or her full place in society.

This is not an easy task and it takes the family and the hospital team many years of co-ordinated treatment. A comprehensive programme has been developed to follow your baby from birth to early adult life, by which time treatment is generally complete.

The specific aims of treatment include:

• a normal facial appearance with normal growth and development of the face
• prevention of speech problems
• prevention of hearing problems
• normal feeding and chewing
• the development of a normal personality

Each child has different problems and treatment is tailored to the individual needs of the child and his or her family. Members of the team may include:

• Plastic and Reconstructive Surgeon
• Ear, Nose and Throat Surgeon
• Specialist orthodontist
• Speech Pathologist
• Audiologist
• Nurse
• Dentist
• Paediatrician and/or Genetic Counsellor
• Social Worker

This book has been designed to be a basic reference guide. It will answer many of your questions, but you may have other questions not covered in this book. The Cleft Palate Clinic would encourage you to contact members of the Clinic to discuss these problems or any further questions that you may have. Write your questions down so that you do not forget them when you phone or attend the Clinic.

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