O.A.R.A. (Oesophageal Atresia Research)

Founded 1980
President: Graeme Clark
Secretary: Lori McIntosh
Treasurer: Denise Paxinos

The OARA Story

This group supports the Adult Patient Review Clinic. Their efforts go to helping families of both new-borns and older patients with Oesophageal Atresia (a disease affecting the oesophagus and stomach in infants). This group is made up of parents and friends of children with this disease. OARA is involved in funding a project involving transposing OA patient records to a database. When completed, it will become a unique record available to the medical fraternity worldwide for referral and research.

Annual Report

Over the past year OARA has continued our focus on the provision of family support. There were 17 new babies admitted to the RCH NNICU with TOF/OA in 2007 and, to end March, 9 babies born in 2008. OARA committee members have visited family members in the neonatal unit, or provided support via phone conversations throughout the year. Most of these families visited have gone onto become members of OARA, and have remained in contact through the year.

We are very proud of the formation of the OARA playgroup, set up by Laura Overdyk, who joined the committee last year following the birth of her daughter Kaytie in February 2006. This year the playgroup has a regular meeting place, in a community centre in the Docklands, and they meet on the 3^rd Monday of each month. OARA has committed to funding the yearly fee for each family and for new families that wish to join as they leave the neonatal unit. We already have 9 families involved and look forward to welcoming more! This initiative has been an invaluable support to parents of TOF/OA children, as well great fun for the children that attend.

Parent support continues through our family days that we hold annually.Our family morning tea was hosted on Saturday 16^th June 2007 in the foyer of the Ella Latham theatre. Entertainment was provided by Tim Credible the magician and catered for by Glen Valley catering. We had around 40 families attend, many being new families, and a lovely morning was had by all. These family days provide a great opportunity for parents to get support from other parents and committee members, as well as the children having a lot of fun.

We also had our family picnic day at the SPC Kidstown in Shepparton in October where 9 families attended. We had families attending from nearby areas as well as some travel up from Melbourne. We also had one adult OA patient attend who was local to Shepparton and it was interesting to hear her experience.

Family support has also been provided by continuing to assist financially with vouchers for the equipment distribution centre, or chemist vouchers for babies needs on discharge.

Parent packs have also now been updated to give to new parents in the NNICU. These new information packs include our new brochures that OARA had updated and newly printed and modernized last year, as well as committee contacts, OARA newsletters, and other relevant material.

Over the last year, OARA along with nurse Alisa Hawley also responded to many parent queries that were posted via the OARA web site. As OARA is the only support group in Australia we get many enquiries on the site from people both in Melbourne, and through Australia, as well as overseas.

This past year, the main areas of funding has been for Alisa Hawley and her continued updating of the Nate Myers Data Base, as well as her work in the NNICU as a patient support/liaison between new admissions to the unit and their introduction to OARA. Alisa provides parents with support on the unit by becoming their care/case manager, by providing them with the information pack related to TOF/OA, and relevant brochures and by offering them contact with or a visit by an OARA committee member. Alisa’s work both on the database and her role supporting patients and their families on the unit as care manager and patient liaison between the NNICU and OARA are much appreciated and highly valued by OARA.

OARA continues to be committed to funding research into TOF/OA and we are always seeking contact from relevant personal, be it medical, nursing or other relevant bodies, so as to continue to make progress in helping to understand the causes, prevention, best treatment and outcomes for this condition.

Our yearly Golf Classic was held on Friday 21^st September 2007 at Box Hill Golf Club, ably organised & managed by John Graham. This is our primary fundraiser for the year, and OARA is extremely grateful to the many sponsors of this day, some who have been involved since the very first classic, sixteen years ago!

The 16^th OARA Golf classic was a huge success this year with record numbers of players and new sponsors, including one adult patient that attended for the first time.

The committee were grateful to have Dr Keith Stokes as the guest speaker. Keith retired last year from the RCH, and we have been very blessed having Keith support OARA over many years, having had a special interest in the condition, as well as being a fine surgeon, who successfully operated on many babies born with TOF/OA. Keith was one of the instrumental doctors involved in setting up the St Vincent’s adult clinic, providing ongoing care for patients too old to continue as patients at the RCH. Keith has also been a great supporter of the Nate Myers database.

OARA would like to thank Keith, as well as all the sponsors, parents, friends, colleagues and everyone who made our golf day such a success.

OARA initially funded and has continued to fund the Nate Myers Data Base, which hold all the histories of TOF/OA patients ever treated at the RCH, detailing their initial admission and treatment. Alisa Hawley is funded by OARA to continue updating patient’s details onto the database, which needs to include all subsequent admissions treatments and outcomes. This is a very time consuming process, and is also to include eventually the outcomes of treatments as adults. This database is the biggest in the world that we know of related to this condition and the doctors at the RCH have already begun presenting research papers around the world of some of the findings as a result of the database.

Looking to the year ahead.

We have recently had contact from parents in NSW who would like to start a parent support group up there. It was suggested by Alisa Hawley that perhaps we could extend OARA as a national group and we will be looking into that more this coming year.

OARA is also keen to establish better links with the overseas support groups particularly TOFS UK and the French support group who were have been in contact with more over recent years.

As always, parent support, and research are paramount, and one of the big areas of parent support that is sought relates to feeding issues and oral aversion, particularly in the first 2 years following birth. OARA would like to look more into this over the coming year to see if perhaps OARA in consultation with the doctors, nurses, speech therapists and dieticians may be able to help set up a support group for this particular area related to TOF/OA.

OARA continues to enjoy wonderful support from its members, the Auxiliaries office and the nurses and doctors of the Royal Children’s Hospital, and looks forward to another successful year supporting our TOF/OA community.

Donations by OARA Golf Classic Day

ChIPs Program
$3,000
Burns Unit
$3,000

The OARA Auxiliary will be funding the development of a data base regarding Oesophaegeal Atresia during 2003.

Last Updated 19-Sep-2008. Authorised by: Sue Manson. Enquiries: Sue Manson.