Oesophageal Atresia Research Auxiliary

RCH > Affiliated Organisations > RCH Foundation > Oesophageal Atresia Research Auxiliary

December 2005

President's Report – AGM March 2005

In This Issue

President's Report

Incoming President’s Report

OA Research Auxiliary of The RCH

Ballarat Regional Picnic

OA Review Clinic for Adults

After Hours Emergencies

Subscriptions and donations

Nicholas Clark and baby brother Harrison

Newsletter Archives

OARA continues to thrive with the input and injection of fresh ideas from new parent members joining the committee and accepting key roles to guide the future direction of the auxiliary. I had been concerned that long term committee members such as John Graham, Rod Cole and I, who have each served for over 25 years since our children were young patients, may be losing touch with the issues facing current day parents of OA/TOF babies. We will continue to be involved and make contributions, offering our support when and if required.

For those who are unaware I have decided to step aside as President and congratulate Karen Gawne on her appointment as new President. I am certain that, with your support, she will do a fine job.

During the year OARA held Family Days which were highly successful and provided those attending a forum to meet other parents and chat about common issues in a relaxed and friendly environment.

The OARA Golf Classic was again a huge success and is our major fundraising event.

Thank you to the Committee for their efforts throughout the year and to all who have assisted OARA by attending functions and the generosity of donors/sponsors of cash or products for these functions.

Congratulations to committee members Simone Withoos, Lisa Hawley and Lori McIntosh who were each blessed with healthy babies during the year.

I encourage anyone who wishes to be actively involved with OARA to contact a committee member and attend a meeting. It is a very pleasant and fulfilling experience and only requires your attendance at 6 meetings a year.

Without the continuing support and assistance from the Neo Natal Case Managers, the Surgeons and Doctors and the Auxiliaries staff OARA would not be as relevant and strong as it is. Equally, without the involvement of the wider OARA community the ability to sustain our development would be impaired. Accordingly, we trust you will continue your OARA membership and if possible provide a donation in with your subscription.

Graeme Clark Outgoing President OARA

Incoming President’s Report

Hello to all of our members. OARA would like to update you of our many activities during 2005.

In early 2005, the committee had several meetings with the Royal Children’s Hospital (RCH) medical staff and the Gastroenterology Medical staff involved in the St Vincent’s adult clinic. The adult clinic at St Vincent’s was established in 2000, with OARA supplying funding to provide our adult OA patients with a follow up clinic that would include the involvement of the RCH doctors.

There are 485 infants that have had surgery for OA/TOF at RCH up until 1982. Of these 288 were contacted and invited to attend the clinic. Of those invited, 132 attended the clinic between 2000 and 2003. In 2005, following meetings with key medical staff, OARA agreed to partially fund a research fellow. The fellow will be employed to collate the information on the Nate Myers database and the information from the adult clinic. This information will be used as a research tool for studies into the ongoing management of OA/TOF patients into the future. Ideally the information will be available internationally, via academic publications, in medical journals.

We would like thank Dr's Keith Stokes and Alec Auldist for the their support over the previous years and we are delighted that Dr Russell Taylor has taken over the role as head of thoracic surgery and agreed to be the surgical/medical representative of the RCH for OARA. Additionally we would like to thank Dr Joe Crameri and Ms Alisa Hawley for their ongoing assistance with the database.

OARA’s continued focus is the ongoing parent/family support. Some members of the committee have continued to meet with parents with newly diagnosed OA/TOF children (20 new patients were admitted during 2005 to the RCH). The family morning teas/fun days have continued with a meeting on June 4 2005. Another highlight was our inaugural regional family picnic on November 12 in Ballarat. Both functions were well attended and an overwhelming success.

As President I would like to take this opportunity to thank the committee for their hard work and dedication in making 2005 a success. A final thank you to all of our OARA members whose ongoing interest and involvement in OARA is necessary to sustain our development.

Kind regards Karen Gawne President

Oesophageal Atresia Research Auxiliary of The Royal Childrens Hospital

Pictured are Vaughan and Emma Carter at their recent
wedding. Vaughan, a former OA patient, is the son of Di
Pollard, joint founder and original OARA Committee member.

Below is an extract from a presentation at the 2005 AGM by outgoing President Graeme Clark outlining how OARA evolved and what it has achieved. Many of you would have been involved in these activities and events over the years. It makes impressive reading.

Established 1979 by Nate Myers And Di (Carter) Pollard
Objectives are to raise funds and fund research into OA/TOF conditions and/or related conditions and support groups.
Membership – 327 [At March 2005 – Ed]

Events

Dinner Dances – charity auctions
Stalls in the entry foyer of the RCH
Ford Car Show – Ballarat
Seminars at RCH
Family Days – zoo, swimming pool and at RCH
Annual General Meetings – variety of guest speakers focusing on OA/TOF and/or related conditions
OARA Golf Classic - our major fund raiser - 14th this year

Donations

Windermere Foundation
Voluntary workers in the auxiliary shop with all hours worked credited as dollars to the OARA Trust Fund
Membership donations and bequests
AAMI
OARA Golf Classic

Other RCH Groups Supported

Burns Unit – Weekend Camps
ChIPS – Weekend Camps

Initiatives

Funded cots, pushers, medical equipment and T.V for Neo-Natal department
Produced brochures to inform community services groups and educational groups
History Of Oesophageal Atresia video
Web Site created and updated
Newsletter high quality with meaningful content
Instigate early contact with parents of new borns in conjunction with neo-natal case managers
Developed emergency after hours admission procedure – in conjunction and after consultation with surgeons
Family days to foster support and provide closer contact

Research Projects

Chetcuti Study Patient Group
Mary Ellen Wohl – Genetic Study
Agnes Bankier – Genetic Study
Dr. Qui Baoquan – Adriamycin Induced Rat Model of O.A *Spencer Beasley Report
O.A Data Base
Adult Review Clinic RCH and St Vincents
Respiratory Pump – Physio Technique

Total Research Funded > $400,000

Mentors

Nate Myers ( Oara Co-Founder)
Alex Auldist
Keith Stokes
Joe Crameri
Tony Cato-Smith
Russell Taylor
Alisa Hawley
One of the main reasons OARA has developed to its present state and will continue in the years ahead

Where Are We Going?

Continue Existing Programs

Early contact – support
Provide updated information kit
Regular family days -expand to regional areas
Data Base – ensure it is maintained and updated
Adult Review Clinic – link to the data base to provide child and adult profiles

Future Research

Ensure Data Base becomes a research tool by seeking out and funding appropriately controlled and monitored projects that produce meaningful papers or reports
Support ancillary research projects for related illnesses

Update from the Oesophageal Atresia Nurses at the Royal Children’s Hospital

The past year has been a busy one with 20 new patients with TOF/OA (Tracheo-Oesophageal Fistula/Oesophageal Atresia) admitted to the Neonatal Unit at the Royal Children’s Hospital. The majority of these patients had the most common type of TOF/OA, i.e. oesophageal atresia with a distal tracheo-oesophageal fistula. In this type of TOF/OA the gap between the two ends of the oesophagus is usually small enough to enable surgery to be undertaken to repair the problem in the first few days of life.

Previously Monash Medical Centre also cared for a small number of babies born with TOF/OA; these babies are now being transferred to the Royal Children’s Hospital for surgical management. Three babies from Tasmania with TOF/OA were also treated on the Neonatal Unit.

We now have three Oesophageal Atresia Nurses employed at the Royal Children’s Hospital. The nurses are employed on a casual basis and are funded by OARA. The nurses are Lisa Hawley, Beverley Weate and Jo Brooks. All are nurses on the Neonatal Unit. Lisa Hawley returned from maternity leave in June and Jo Brooks has just commenced in the position to enable a greater coverage of days throughout the week.

The role of the Oesophageal Atresia Nurses is to provide parent support and education regarding TOF/OA to families of both newly diagnosed and older TOF/OA patients at the Royal Children’s Hospital. The nurses are also available for advice and support once the baby/child is discharged home.

The nurses also receive calls from parents who have had children cared for by other hospitals in Victoria and interstate.

The Oesophageal Atresia Nurses also collect data for the Nate Myers Oesophageal Atresia Database. The database contains information on TOF/OA patients cared for at the Royal Children’s Hospital since 1948. This database includes information such as the type of TOF/OA, surgery undertaken and complications such as gastro-oesophageal reflux, oesophageal leaks, strictures and tracheomalacia. We now have 832 patients on the database.

The plan for 2006 is for the Department of General Surgery to employ a surgical fellow to access the database and undertake the writing of some research articles for the medical journals. It is also hoped that information from the database will enable the updating of the book “Oesophageal Atresia” which was edited by Beasley, Myers and Auldist and written by medical staff at the Royal Children’s Hospital. The surgical fellow’s position will be partly funded by OARA.

Families of newly diagnosed TOF/OA patients are again being offered support visits from OARA during their baby’s first admission. Approximately 50% of families are accepting this offer and the Oesophageal Atresia Nurses liase with OARA to arrange a suitable time for a member of the OARA committee to meet with the parents on the Neonatal Unit. Parents of babies who are critically ill with other associated problems have generally declined the offer of a visit.

Patient Profile - Dylan Fisher

In December 2002 our son Dylan Robert Fisher was born. He was born with TOF and 2 heart murmurs. These issues were not detected during the pregnancy. To say we were shocked is something of an under statement.

Dylan was transferred to the Royal Children’s and operated on, to repair the TOF by Tom Clarnette. After 10 days and a dream recovery we came home.

Early this year the cardiology department closed the remaining heart murmur, (the other one had closed itself, over time).

We wanted a second child, but my pregnancy with Dylan was not easy and the thought of something going wrong again was terrifying.

Steve and I spoke at length about the chances of us having another TOF baby. We were somewhat comforted by the fact that no one we had spoken to had known it to happen twice in the same family.

I spoke to Tom Clarnette about the chances of it happening again, his words were comforting- “it won’t happen again…but if it did, you know I can fix it”

Early in the pregnancy I was at the G.P’s and I confided that I was scared something, anything, not necessarily TOF, would go wrong again. He told me I was allowed to be scared, and until I held the baby in my hands and could see for myself that everything was okay I was going to continue to be scared. How right he was! To hear a doctor give me permission to feel apprehensive and concerned made me feel better; my feelings were normal.

The obstetrician who treated me whilst pregnant with Dylan, conducted his own ultra sounds, (Dylan’s TOF was not visible on the scans). He is no longer practicing as an obstetrician, but continues to complete ultra sounds. I found a new obstetrician. After explaining my complications and those Dylan had when he was born, he treated my pregnancy as an above normal risk pregnancy.

I received fantastic care. I was reassured that they would take no risks and extra ultra sounds were ordered. He referred me back to Dylan’s obstetrician for the ultra sounds. The reason for that was he was highly regarded for his ultra sound skills, and he knew my history. In the ultra sounds, extra attention was paid to the oesophagus- again nothing adverse was detected.

Due to complications the decision was made to induce me early, with in the obstetrician words” all possible medical staff on standby”. Maya Grace Fisher was small but healthy. She came home 9 days after being born - she had not been eating well. She is now 4 months old, eating normally during the day, and sleeping through the night and is wonderful.

Given the complications Dylan had, and to a lesser degree Maya, we have decided our family is complete. For those of you, who are considering another pregnancy after a TOF baby, whilst you may never totally relax whilst pregnant, rest assured you are allowed to feel that way- and you could be as lucky as we were, and have a healthy baby. Diane Fisher. OARA Committee

OARA Family Brunch

Pictured are Kikki and Mitchell Dean
at the family brunch

Pictured is Nathan McIntosh son of Lori
(OA Patient), OARA secretary and grandson
of John and Anne Graham, at the family brunch.

Congratulations to all the winners, and thank you to
all 69 players who took part.

Pictured is Luis. Note the original OARA poster
which shows him as a young OA patient

On Saturday 4th June 2005 OARA held another successful and well attended Family Brunch. The personal invitations sent were handmade and created by Nicole Clark and her efforts are much appreciated.

including some from Northern Victoria and Gippsland were all rewarded for making the effort of such a long journey by the large and friendly group of over 20 families, including some grandparents, which gathered in the Ella Latham Foyer at RCH. These functions are becoming a regular event on OARA’s calendar and afford an opportunity for parents to discuss and share experiences in a relaxed, happy and safe environment. Lucky dips were provided for each child and with Kikki the clown entertaining and plaster painting; they were well truly occupied during the morning.

The catering was very well received and a big thank you goes to Linda Clark for organizing this and especially for making sure of a continual supply of hot savouries throughout the morning.

At the conclusion of the morning each family headed home with a delightful gift hamper. All of the goods were sourced and gift wrapped thanks to the efforts of Denise Paxinos.

Please join in and share these special days as they are well worth attending.

Our thanks to the Plaster Fun House in Malvern for again providing us with a great activity for the kids. It was lots of fun and it was lovely to see many old families and some new families getting the chance to have fun at the hospital for a change. Thanks again to everyone who came and made the morning a great success.

The 2005 OARA Golf Classic

The 14th Annual OARA Golf Classic, held at the Heidelberg Golf Club on Friday November 18, 2005, was played in good weather and good spirits by a total of 69 dedicated OARA supporters. Although numbers were down slightly on recent years, the later then usual date for the event was largely responsible for the loss of some of our regular groups who have assured organisers that they will be back in 2006 when the tournament will revert to its’ usual time in September.

The winners of the 2005 OARA Golf Classic were the Mick Miller foursome of Andrew Smith, Craig Gislingham, Robert Pol Bodetto and Mick. Mick has been a long time supporter of the OARA Golf Classic, and we are delighted that he and his friends now have their names on the trophy.

Runners up were Peter Werner, Paul Julian, John Tarka, and Peter Maunder, while third place went to John Tunstall, Greg Krenn, Paul Philpott and David Murrihy.

Winners of other prizes on the day were –

Straightest Drive - on Hole No.1 Peter Munro
Nearest the Pin - on Hole No.2 Peter Maunder
Nearest the Pin - on Hole No.13 Jeff McGee

The excellent luncheon following the golf tournament was attended by 84 persons, with a number of sponsors, OARA committee members, and invited guests in attendance. Oara patient Luis Garotti, the 15 year old son of committee member Grace Garotti and husband Steve, was the guest speaker for the day. Luis used a PowerPoint presentation most effectively to highlight some of the important medical milestones in his life with oesophageal atresia, and is to be commended for his presentation which helped guests to much more easily understand the complications that can be associated with this illness. Well done Luis!

Sue Manson, the Manager of the Royal Children’s Hospital Auxiliaries, was a guest of OARA at the luncheon, and Sue gave a stimulating speech highlighting the work of the 80 Auxiliaries in general, and supporting the work of OARA in particular. OARA thanks Sue for her contribution, and especially for the assistance that staff in her office provide year round to OARA.

OARA President Karen Gawne spoke during lunch, thanking sponsors and players for their support for the OARA Golf Classic, and reviewed the work of OARA in the last year.

The OARA raffle was a great success as usual, raising a total of $ 1783.00, which - when added to other income from players and sponsors - saw the profit from the 14th OARA Golf Classic reach the grand total of $ 10,487.11

OARA thanks John Tunstall, who once again gathered an excellent array of prizes for the raffle, and committee members Denise Paxinos and Brian Clarke, who both secured a range of quality gifts from various business contacts. The OARA committee wishes to acknowledge the generous financial support of the following sponsors of the 2005 OARA Golf Classic.

ABI GROUP ASSET SERVICES
AUSTRALIAN AIR EXPRESS
R. N. BARR SANDBLASTING
CLANBROOKE RACING
INDEPENDENT CRANE HIRE
INFRADIG
J. D.’S TRUSS COMPANY
OPEN DOOR PUB COMPANY
THE COODABEEN CHAMPIONS
THE MACAFEE FAMILY
WRIDGWAYS THE REMOVALISTS

OARA thanks the following companies that provided gifts for the OARA Golf Classic

Telstra
Mobiles 2000
The Lobster Cave
Stanley Rogers
GK Travel
McWilliams Wines
Cadbury Schweppes
Banfood
Metfasteners Holdings
Linen House Pty Ltd
Knox Tavern
Genesis Fitness Club
Tunstall Plant Hire
Heidelberg Golf Club
McIntosh Knitting
Sidetracked Entertainment
Navigator Investments
The Golf House, Ringwood
Hutchison Telecoms
RCH Auxiliaries

The OARA Golf Classic is the major fundraising event of the year for OARA, and the committee would like to encourage greater support for this event in future from the members of the Auxiliary. In addition to players to take part in the tournament, the organisers need assistance from members in sourcing sponsors and donors of gifts for player show bags and the raffle. If you can assist in any of these ways, please phone John Graham on 9884 5733 or email at johnhq@optusnet.com.au , and he will be happy to discuss how you can help.

The date for the 2006 OARA Golf Classic is expected to be Friday September 22, but the host course for the event has not yet been confirmed. However, OARA members are asked to put the date on their calendars and make a decision to be a participant, sponsor or donor for next year’s tournament. Thank you.

John Graham – Organiser, OARA Golf Classic.

Ballarat Regional Picnic November 12 2005

Former OA/TOF patients enjoying our inaugural regional picnic

It was decided that OARA would like to hold an annual picnic in regional areas to cater for country members that may not be in a position to travel to Melbourne for other OARA functions.

The City of Ballarat was decided as our inaugural destination, due to its central location to Ballarat, Bendigo, Geelong and the Bellarine Peninsula areas. The specific venue was the Adventure Park opposite the Ballarat Botanical Gardens. Nine Families attended and all enjoyed a day of meeting other OA/TOF kids and adults (ranging from 7 years to mid 40’s) with their families that included kids playing, information being swapped, great conversations, BBQ’s and paddleboat rides.

The last families left at 6.30 PM, which indicates the success of the day. Christine Sobey who is one of adult members has offered her property at Harcourt for our next regional family picnic. Christine has a butterfly farm on her property and we are sure that many families will enjoy attending. The proposed date is likely to be during April/ May 2006. A special thank you to Christine for her very kind offer.

Oesophageal Atresia Review Clinic for Adults

The Adult Clinic held monthly at St. Vincent’s Hospital continues to offer ongoing care or initial assessment to adult OA/TOF patients. Adults who have not visited the clinic are encouraged to do so if they are not under the care of a specialist.
– at least for the initial assessment. All patients are bulk billed.

The initial busy stage is over and the clinic is now run alongside an “Oesophageal disorders clinic”

Oesophageal Atresia Clinic for Adults
St Vincent’s Hospital Melbourne,
41 Victoria Parade, Fitzroy, 3065.
Phone (03) 9288 3222

After Hours Emergencies

If you have concerns about your child that would normally warrant them being seen in emergency for specific TOF/OA related problems. Such as:

Strictures/narrowing needing immediate attention
Food becoming stuck/lodged in the oesophagus
Problems with gastrostomy tubes – leaks, falling out, blockages and infections
Problems with oesophagitis or gastritis needing immediate attention
Other associated medical/surgical problems related to TOF/OA

The following course of action should be taken:-
Parents should ring the RCH main switchboard on 9345 5522 and explain that their child is a patient of whoever their primary surgeon is and that they need to speak to that surgeon regarding their child. The switchboard operator will take the parents name and number and will either page the requested surgeon, or the consultant surgeon on call, who will be one of Alex Auldist, Keith Stokes, Russell Taylor or Joe Crameri.

The on call consultant will then call the parent directly to discuss the problem and to decide upon the appropriate course of action. This may entail arranging for the surgeon to meet the patient at the hospital or arranging for the duty surgical registrar to do that on the surgeon’s behalf. During normal working hours the surgeons should always be contacted directly through their consulting rooms and secretaries.

For any other problems that are non TOF/OA related which may result in a child’s admission to emergency the normal admission procedures will apply.

Subscriptions and donations

Your OARA committee over the years has been committed to providing funds for research on OA/TOF related conditions. All research is approved by the Royal Children’s Hospital Research
Foundation and, in some cases, has received worldwide acclaim. Clearly, this has assisted the treatment of the OA / TOF condition and improved the quality of life of many patients.

Since 1980 we have funded research, equipment provision and other projects totalling in excess of $400,000.00. Your financial support is important in assisting us in continuing our work. We look forward to receiving your annual subscription of $10.00 for the year 2006 and invite you to also consider a tax-deductible donation of $20.00 or more at the same time.

Please find enclosed my/our Annual Subscription of	$10.00
Plus my/our Donation of	$
Total enclosed	$

Name:
Address:
Postcode:
Child's Name:
Mail to: The Treasurer OARA PO Box 370 Boronia 3155

Last Updated 10-Sep-2008. Authorised by: Brian Mallon. Enquiries: Rodney Cole.