Transcript from Cleft Palate Video-Teleconference:

I will now give you an outline of CleftPals Queensland Inc and how it works. We work from our homes on a volunteer basis and are a non profit association who do not receive any government assistance. We rely on memberships, your basic fundraising such as craft stalls, raffles and sausage sizzles. When we require larger items such as office and communication equipment or for special projects we make an application for a grant and hope we are successful. To date we have received three grants, one to assist us with the production of a Die so we can produce our own cap sets designed to fit our wide neck squeeze bottle. The others purchased and upgraded our office equipment all of which is helping to make us more professional.

All Committee members and representatives work from their homes. Assistance is available for all families and relatives of children born with the Cleft condition. Contact must be made to us by a family member or by a professional working with the new family. We do not just arrive after hearing of a new cleft baby, we must be invited.

CleftPals offers new families a copy of our new parent kit of information which covers all aspects of the cleft condition from conception, birth, feeding equipment, feelings, and information on speech and ear nose and throat. There is also information on Children’s Oral Health Services and a flyer on the Genetics Service available at both the Royal Children’s Hospital and Mater Mother’s Hospital.

CleftPals has produced a book on personal stories written by some of our members. This is available for purchase at a cost of $20.00 including postage and handling. The book is of great assistance for any new parents, especially if they are questioning themselves and their feelings after the birth. After reading the stories and realising that there emotional feelings and guilt have been felt by others, it usually helps them feel more at ease. There are beautiful before and after colour photos which always help families cope when wondering how their child may look after surgery.

We also assist families who have ultrasound during pregnancy and a cleft is detected with their baby. We educate them with the information available, put them in contact with another family who has gone through the same emotions and so called roller coaster ride and try to help them prepare themselves for the birth. This is done especially with the special feeding equipment available. We suggest visiting the hospital facilities where Cleft Children are involved and especially to the wards where they are admitted for surgery.

We rely on professionals to assist our group with updated information and work with the surgeons when offering parents their post management information.

We have a library facility available to members and professionals and offer lecturers and In-services to students and hospital staff members. This helps make them aware of what information and equipment we have available.

Our contacts to new families are organised and suitable arrangements are made for one of our 27 contact parents living in the Queensland area to visit, either in hospital or when at home. It is quite common for us to have many phone contacts with new families. This is often just to answer the simplest question, while others need reassurance that with time everything will settle down and fall into place for their family.

CleftPals has a good working arrangement with the Speech Departments at both children’s hospitals in Brisbane and Children Oral Health Services at the Royal Children’s Hospital. These departments offer assistance when and where ever possible and hold all updated information CleftPals have and they also offer support to our group when required.

CleftPals holds conferences for their members. An example was our Teen Conference held at the Royal Children’s Hospital in 1996. This was a great success and the day was enjoyed by all who attended. We organised guest speakers to assist them in understanding what work was available in their final stages of surgery and to assist with their self images through those most important teen years. A surgeon, orthodontist, child motivator and a make-up person were organised for this day.

Our Contact Parents hold information folders which are updated regularly and there are also yearly seminars with guest speakers provided for them to attend. Our last seminar of this kind was in September ’97 where we had members discussing Unexpected Challenges other than the Cleft Condition with a special guest speaker discussing the Human Genome Project.

We hold our Annual General Meeting in May every year and again provide a guest speaker. This year we had Julie Donnan the CNC from Fraser Ward at the Royal Children’s Hospital discussing Ward Care and Theatre Procedure.

CleftPals main aim is to provide support in all areas of the cleft condition, with information on the latest feeding equipment available for Cleft children and also to let these people know we hold this feeding stock to sell. All stock we sell has been discussed with the surgeons and speech pathologists involved with the Cleft Clinics at both the Royal Children’s Hospital and Mater Children’s Hospital. We also run a hire scheme where we can offer special post-operative feeding equipment and arm splints at a very low cost. This service is of great assistance to families and has proved to be most successful.

Although breast feeding a cleft baby is in most cases unsuccessful, we offer support with whatever decision mum makes about her child’s feeding, but usually suggest to them to purchase a "CleftPals Squeeze Bottle and suitable size Chu-Chu Cleft Palate Teat" to fall back on when they go home.

Quite often the decision mum has made at birth on feeding changes soon after arriving home. An example is that they may wish to breast feed or are encouraged to do so while in hospital, but when home this may not be successful and mum finds herself struggling to express and feed using the special feeding equipment. This is time consuming, especially if baby is a very slow feeder and you are also expected to run a household. Usually this is when there is a need to have and organise more feeding equipment. Therefore we feel it is especially important for families to know where and when these items can be purchased and CleftPals can help with this information.

There is a membership fee to all interested persons and this is $25.00 yearly with a special needs fee of $15.00 per year. All new families contacted have a 4 months free interim membership with written notice after this period of time. We compile 4 newsletters per year which entail a welcome to new babies, personal and professional stories and the occasional internet information which we feel will be of some interest to members.

Continual support can be offered by one or more of CleftPals representatives if required and CleftPals phone details can be found listed under "C" in the white pages of the telephone book for Queensland and other states in Australia.

Please don’t hesitate to contact us if you wish to discuss a cleft family in your area, or just wish to make a general inquiry on information available or feeding equipment.

Hopefully this information has helped you understand how we work and what support we can offer cleft families.

Thankyou!