• About OARA
• What is Oesophageal Atresia?
• Research
• Adult clinic
• Newsletter
• How to help OARA
• Mailing list
• Events
• Links
• Contact us

Print version

 

Newsletter December 2002

December 2002

In This Issue

22nd OARA AGM

Ann Maree Haig Pope

Golf Classic

ChIPS

OA Research Nurses

Oesophageal Atresia Database Project

Patient Profiles

Oara is going online

After Hours Emergencies

Newsletter Archives

Annual General Meeting

The 22nd Annual General Meeting of OARA was held on March 25th, 2002, at the Royal Children's Hospital. OARA President Graham Clark reported on the activities of our Auxiliary and its three major achievements over the previous twelve months.

Adult Patient Review Clinic

It is almost two years since the clinic was established and the feedback we are receiving from both patients and the medical teams certainly confirms the ongoing support OARA has committed to the project.

Parent/Patient Support

We continue to improve our efforts in supporting families of both new-borns and older patients. With the assistance of the neo-natal case, we have endeavoured to make early contact with parents prior to discharge. The purpose is to offer support, to demonstrate that there are others who have been through similar experiences, share information and reinforce the positives. I would like to thank the committee members for the extra time and effort expended for this important initiative.

We have again opened a line of communication with Monash Medical Centre and will pursue this over the coming year to promote OARA to families.

Our Treasurer, Denise Paxinos has arranged a twelve month sponsorship for a $50.00 voucher to be spent in the hospital's supply shop. This is to be given to families as part of the discharge procedure for OA new-borns. We are sure this will be well received and will endeavour to continue this in the future.

We have also created 'after hours' emergency guidelines to assist avoiding some of the angst surrounding a re-admission. I commend this to all parents and thank the surgeons for their assistance with and support of this process. (Ed: This procedure was included in the last newsletter and has been reproduced in this issue.)

The Nate Myers Oesophageal Atresia Data Base

The funding of this important project has been agreed by OARA. It is envisaged that it will link to the Adult Patient Review Clinic. The RCH has approved the integration and the enhancements to the database software. We have, with great pleasure, appointed Alisa Hawley to the position of Researcher and Data Base Processor. We believe that Alisa's commitment to OARA and the OA condition, as well as her previous experience with maintaining the original database, will be invaluable in the timely completion of the project. In addition, it is anticipated that Alisa will also compile papers in relation to both OA and the database which will, no doubt, recognise OARA's support.

In conclusion, I would like to express my thanks to the dedicated committee, volunteers, friends, Auxiliary's office staff, the medical staff, doctors and surgeons who have once again provided invaluable and ongoing support to OARA. "

Graham Clark

Ann Maree Haig Pope

March 15, 1972 - September 16, 2002

Ann Maree Pope, oesophageal atresia patient and daughter of OARA member Mavis Pope, was tragically lost at sea on September 16, 2002.

The following inspirational story of Ann Maree's life was written by Mavis in the Herald Sun ( Oct.10, 2002 ), and is reproduced here with her permission.

Ann Maree Pope squeezed more into 30 years than most do in a lifetime. She excelled as a radiographer, sailor and philanthropist.

Ann Maree was born at St. Vincent's Hospital but within half an hour was in the Royal Children's Hospital under the care of then Director of Surgery and later family friend, Nate Myers.

For the next five years, much of Ann Maree's life was spent in the Children's Hospital being treated for a rare digestive problem. Her memories of the hospital and their caring staff compelled Ann Maree from a young age to return the favour.

This year, Ann Maree was presented with a 20 year badge from the RCH's St. Kilda Auxiliary for her tireless and impressive fundraising.

Ann Maree attended St. Michael's Grammar School where she completed HSC with impressive marks. She was held in high regard by staff and students alike, for her 'go get em' attitude and friendly disposition. She was involved in drama, sports and fundraising, and was a skilled organist.

Despite all those years as a patient, year 10 work experience at the RCH under the guidance of Dr. Myers cemented Ann Maree's desire to work in the health industry. In 1990, Ann Maree began studying for her Applied Science ( Medical Radiation ) degree at RMIT.

While at university she began rowing as a coxwain, each year attending inter-varsity meets. She also joined the Power House Rowing Club.

In 1994, she began her first job as a radiographer at the Alfred Hospital. After this, she worked at Bairnsdale, Cairns and Townsville and finally Cabrini Hospital, where she remained for the last five years of her life. She embarked on her Great Australian Adventure which included North Queensland, Darwin, Kakadu, Alice Springs and then the Ghan to Adelaide.

In 1998, Ann Maree's father, Basil, died a week before she was due to leave for an extensive overseas trip. Several months later, the determined young woman set off for the holiday of a lifetime, to see Europe.

In 2000, she embarked on a most-remarkable trip to Alaska, where she took a lengthy trek across mountain ranges with a small group of travellers.

Another passion of Ann Maree's was sailing. She was a member of the Royal Melbourne Yacht Club for five years. She won the Victorian Women's Keel three years in a row, with different boats and crews.

The yacht club members were like a second family to Ann Maree, especially when away from home on one of their adventures. The members knew her as Budgie, because of her gift of the gab.

Ann Maree was lost at sea with four others when the yacht Excalibur sank off the coast of New South Wales three weeks ago.

Ann Maree is survived by her mother Mavis, and brother Andrew.

On behalf of all members, the Committee of OARA extend their sincere sympathy to Mavis and Andrew on their sad loss.

New Committee Members needed

OARA is appealing to parents of patients born in the last 5-10 years to consider joining the committee in 2003.

A number of current committee members have children who are now in their 20's and 30's, and the committee recognises that it needs representation from parents who are more familiar with current concerns relating to oesophageal atresia patients.

The committee meets from 7-9pm on a Monday night at the Hospital a maximum of eight times per year.

Meetings are often attended by members of the RCH surgical team, and provide a forum for discussion of the management and care of patients at the RCH, review of research proposals for support by OARA and improvements to member support activities.

Parents willing to joining the committee are invited to contact President Graeme Clark on 9592-4700 (AH) or Secretary Lori McIntosh on 9486-7149 (AH).

Thank you.

The 2002 OARA Golf Classic

A total of 88 players took part in the 11th OARA Golf Classic held at the Box Hill Golf Club on Friday September 13, 2002. The day realised a grand profit of $10,105.00.

The cost of sponsorship of a hole at the tournament was $500, and OARA is most grateful for the generous input from the nine sponsors of this years event, who each purchased one or more holes as follows -

Other income was derived from the very successful raffle, which raised $1730.00. In addition, a signed North Melbourne Football Jumper was auctioned for $350.00 and a signed Greg Norman cap brought $100.00.

OARA appreciates the generosity of all guests who contributed so willingly to support the raffle and especially wishes to thank OARA member John Tunstall and his staff member Fiona, who together wrote letters to more than 100 companies seeking gifts. As a result of all their hard work, the following donors provided an excellent array of prizes -

- BILLABONG RUG & BLANKET COY
- DOMESTIC TEXTILE CORPORATION PTY LTD
- LINEN HOUSE PTY LTD
- LANCHET WINERY
- DOMAIN CHANDON AUSTRALIA
- McWILLIAMS LILYDALE VINEYARDS
- KNOX TAVERN
- WANTIRNA HEALTH & SQUASH CLUB
- CADBURY SCHWEPPES
- Le MERIDIEN AT RIALTO
- KENMAN CANDY AUSTRALIA PTY LTD
- ZAGAME'S
- HOLEPROOF
- THE NATHAN GROUP
- INTERNATIONAL BRANDS PTY LTD
- TELSTRA
- VILLAGE CINEMA

From the proceeds of the 2002 OARA Golf Classic, OARA is again sponsoring the 2003 summer camps for the Burn Unit children and the ChIPS group ( Chronic Illness Peer Support ), with an amount in excess of $ 4000.00 being retained by OARA for ongoing research costs. The 12th OARA Golf Classic on Friday September 12, 2003 will again be played at the Box Hill Golf Club, and the OARA Committee looks forward once more to the support of its regular band of players and sponsors to ensure that this year's very successful event is repeated.

John Graham Organiser, OARA Golf Classic

ChIPS Camp Crew January 2002

ChIPS Camp Crew January 2002

The following report of the ChIPS camp (sponsored by OARA in January 2002), is provided by Mark Boyce, ChIPS co-ordinator, Centre for Adolescent Health, RCH -
9345 6616

ChIPS is a peer support program for young people living with any type of chronic illness or medical condition. The ChIPS program was fortunate enough to be one of the recipients of funding assistance from OARA in the last year. The support of OARA has made our dream of running a weekend camp for young people living with chronic illness a reality.

ChIPS has over 250 members across Victoria. These young people live with a wide variety of medical conditions from cystic fibrosis to Diabetes, Chrones disease to chronic fatigue. For many the ChIPS camp is the only chance they get to spend a night away from home or hospital. The Camp is staffed by medical and allied health staff from the Royal Children's Hospital and the Centre for Adolescent Health.

In January 2002, 40 members of the ChIPS program attended the two night, three day camp at Cavehill Creek
(20 mins from Beaufort). The camp is based on a competition theme with campers being placed into teams for the weekend and set challenges and activities aimed at both their intellect as well as their sense of adventure. Canoeing, raft building, design challenges, archery are all on the agenda. Over the course of the weekend each team accumulates points depending on effort, attitude and team work. At the conclusion of the camp the winning team is awarded the Walsh Shield and are the celebrated champions of the camp.

The opportunity to take part in a competition-based activity is something that many young people with chronic illness miss out on as the are often unable to take part in the sporting events that most adolescents thrive on. When this is combined with a supportive staff, who are willing to assist and encourage the participants to take on any challenge and will support them through the adventure, you have a weekend that is undoubtedly the highlight of the ChIPS year.

Without the support of OARA the camp would not have been possible. The members of ChIPS would like to thank OARA for its ongoing support and commitment to the ChIPS program.

Oesophageal Atresia Research Nurses At The Royal Children's Hospital

There are currently two Oesophageal Atresia (OA) Research Nurses at the Royal Children's Hospital. The OA Nurses are Lisa Hawley and Beverley Weate.

OARA has funded these positions since late 1996. The original positions involved the Oesophageal Atresia Nurses providing support and information to new parents / families with a newborn with Oesophageal Atresia and/or Tracheo-Oesophageal Fistula (OA and/or TOF). The positions also involved providing information for the Nate Myers Oesophageal Atresia Database.

A full-time position was created in May 2002 to enable information on all patients with OA and/or TOF, cared for at the Royal Children's Hospital, to be updated on the database. Lisa Hawley was appointed to this position. This position is a limited tenure position for one year.

Beverley Weate started in October, 2002. She is employed casually and is based on the Neonatal Unit. Beverley replaces Jane Williamson who has resigned from the position.

Role of OA Nurses:

The Oesophageal Atresia Research Nurses currently meet with all new parents of OA/TOF babies at the Royal Children's Hospital. The OA Nurses continue to provide support and information on the condition. Prior to the baby's discharge from hospital advice is given regarding possible problems that may occur in the future and the signs to look for that may indicate a problem. The OA Nurses are available to answer any questions and to provide ongoing support as required. The OA Nurses also aim to meet with parents and older children with OA/TOF on any subsequent admissions to the Royal Children's Hospital.

In conjunction with the Neonatal Unit Care Managers, the OA Nurses ensure that appropriate information is forwarded to the baby's Maternal & Child Health Nurse and General Practitioner and that these health professionals have an understanding of the condition. The pamphlet outlining possible complications following OA/TOF surgery, given to the parents, is also forwarded.

Information is also collected to enable the Nate Myers Oesophageal Atresia Database to be updated.

Information brochures are given to families regarding OARA, explaining OARA's role as a parent support group and in funding further research into OA/TOF.

The OA Nurse is available for telephone advice during business hours (ph: 9345 5113).

The OA nurses also refer new families to OARA. With the parent's consent they will arrange for a member of OARA to visit whilst the baby is in hospital, or for OARA to contact the family once the baby has been discharged home.

The OA Nurses are also happy to provide information and support to families who have children with OA/TOF not cared for at The Royal Children's Hospital (e.g. Monash Medical Centre).

Lisa Hawley is happy to be contacted on 9345 5113 (9345 6591 if after June, 2003).

Update on Nate Myers Oesophageal Atresia Database Project:

As discussed previously OARA has funded this nursing position full-time for a year.

The position commenced in May, 2002. Lisa Hawley has taken twelve months leave from her position as a Care Manager on the Neonatal Unit at the Royal Children's to update the database.

Lisa's role involves undertaking a retrospective review of all patients with OA/TOF cared for at the Royal Children's Hospital since 1948. Currently there are 785 patients from 1948 - October, 2002.

Information is collected in the following areas:

• Antenatal information
• Diagnosis of OA/TOF
• Associated anomalies
• Surgical Information & course
• Complications & Outcomes

Lisa is currently working her way through hundreds of patient histories (microfiche & hard copies).
At the time of writing this report she has completed collecting information and updating the database on 315 patients and hopes to have completed all 785 histories by May, 2003.

The current figures for the series of patients as at October, 2002 are:

• 666 OA with distal TOF
• 13 OA with proximal TOF
• 5 OA with double TOF
• 56 Pure OA, no fistula
• 45 H-TOF
• (Total 785 OA/TOF patients).

Once complete, the Nate Myers Oesophageal Atresia Database will provide a unique record of Oesophageal Atresia and/or Tracheo-oesophageal Fistula patients cared for at The Royal Children's Hospital. This will quite possibly be the largest series of patients with OA/TOF on record in the world. The database will enable many research papers to be written by medical, surgical and nursing staff. This database will provide valuable information on all aspects of care for the patients with OA/TOF.

The database will continue to be updated by the OA Nurses following completion of the one year position. This ongoing update will involve updating data on subsequent admissions and all new patients.

Patient Profiles

Sophie Paxinos

Oesophageal Atresia: A Mother's Perspective 6 Years down the Track.

When I look at the first picture of Sophie at about 14hrs old, and then I look at the second picture of her school photo in Grade Prep, I can't believe two things, firstly that she was so very sick and secondly that she is now so very well and healthy. Thank God!

In the course of having her TOF/OA repaired at 14hrs old, she suffered cardiac arrest and a collapsed lung. She deteriorated rapidly and ruptured her stomach. All these conditions were repaired, thankfully, but as a result she was in intensive care for about 7 days and hospitalised until about 2 months of age. She was fed through a stomach tube until 8 months of age.

Due to severe reflux, blood vomits and a hernia, Sophie underwent further surgery at 14 months of age called a Nissen Fundoplication. Effectively this surgery tied the top of her stomach and bottom of her oesophagus together to prevent her reflux and further damage to her oesophagus. That is when she turned the corner and really started to grow, eat and crawl. I guess we truly had little idea of how poorly her oesophageus and stomach were functioning until then and we finally realised what it was like to have a healthy baby and we never heard those horrible words 'FAILURE TO THRIVE' again.

Six years later I still dread it when mothers get together and reminisce about what their experiences were like with their first children. How they did or didn't breast feed, or did or didn't sleep or when they reached their milestones, or whatever. My experiences as a new mother were so unlike theirs that I could have been an alien, and I still feel a little sad because I can never join in that conversation without feeling a tear in my eye and a lump in my throat.

They say that what doesn't kill you makes you stronger. Well I wish I hadn't gone through the experience of Sophie's illness to finally agree with that saying. In all honesty I would have much preferred for Sophie to have been born well and for us just to be another boring family living in the suburbs. But it did happen and, as they say on Oprah, 'get over it girlfriend'!

Well we did finally 'get over it' but maybe never completely, Sophie is really well and a very happy little girl, and school has really been a great experience for her. She is very bright and, although a little reserved, has found a 'best friend' and manages her life really well. As her mother though I wish I could say that I coped as well. I dreaded the start of Sophie's school years for at least 6 months prior to the start of school and cried my eyes out in the playground on the first day. Although Sophie had been to kinder, it was a real adjustment for me to let someone else be responsible for her for the whole day and to simply let her go.

School was also a real eye opener for me as I realised that many children suffer from various ailments such as life threatening food allergies, severe asthma, or quite sad learning disabilities, and if I had to place Sophie on a spectrum of health she would be one of the most healthy children around and rarely misses a day through illness. So although she really suffered as a new born with TOF/OA it has barely impacted upon her life since her fundoplication.

As I said above I would have much preferred for Sophie not to have suffered when she was a new born and to have been born well, but since that wasn't to be I am just so grateful that she is alive and doesn't have day to day problems. However, when she came home from school the other day she said that she 'had a problem' which ended up being that one of the boys in her grade always makes her be copper when she wants to be a robber sometimes - I still laugh with joy at that because, honestly, that is her only problem, and aren't I lucky!!!

Madeleine Rose Clarke

We love Madeleine so much! She is funny, clever and gives herself unconditionally. In the process of enhancing our lives completely she has, in turn, taken ten years off them. We prefer to concentrate on the former.

There is little point in dwelling upon Madeleine's condition. Obviously she is a TOF/OA (otherwise she wouldn't be featuring) and has had most of the big procedures performed on her. Great medical staff allowed us to get through those early months. She was a very sick little girl but, thankfully, not as sick as some others that we 'shared our time with'.

Maddo has developed into a resourceful child who copes well with her illness. She is as skinny as a rake but amazingly, and when well, eats better than her identical twin sister, Erica, and her ten year old sister Alexandra. Whenever we watch her march off to school in her uniform, with her 'Minnie Mouse legs' sticking out from below, we often flash back to the Neonatal ward and the doubts that we had that she would ever get that far.

She has made friends, can now read well for her age, is creative, artistic and, at six, has a very substantial vocabulary. Having said that she does not succumb easily to discipline and is impatient with timetables and too much structure. We often wonder if this is symptomatic of her illness and the time she spent trapped in hospital. She had numerous admissions up the age of four.

She was a feisty patient, not always co-operative and often angry. We thought that such behaviour was reasonable under the circumstances and could never understand the odd nurse in the Neonatal ward (we must reinforce odd) and particularly one in ICU, when Maddo was three, who took umbrage to a little girl, who could not breathe or eat, objecting to the constant poking and prodding. Some people do choose the wrong career. The lesson from this was to always take on the fight on behalf of your child.

However, as the gaps between the illnesses have increased the frustration has diminished and a beautiful, loving little girl now dominates. The future is bright and we would assume that the worst is behind her. She is very inquisitive about her condition and delights in looking at her hospital photos. Thankfully she cannot remember the pain. She fought so hard and was so ill that she deserves to have a happy, fulfilled life. One thing for certain is that she will never die wondering. Honest to the core, whenever asked how school was, she will invariably say 'brilliant' -what more can you ask for.

We have taken Madeleine to Europe for a month- with a bucket load of antibiotics, ventolin and medical referrals just in case. She does gym, Auskick, hockey and piano. She is a terrific kid and we would be lost without her.

Oara is going online!

We are currently putting together the OARA WEBSITE! And we hope to have it up and running towards the end of January 2003. The website will be under the domain of the Royal Children's hospital, and will most probably be accessed either directly through the RCH site or by searching under either OARA or Oesophageal Atresia.

The site will include an overview of OARA, including our aims and what we do. Detailed information about OA and TOF will also be available on the site and users will be able to access additional information about the condition through the RCH online medical publications. We have also included an overview of the adult clinic and the re-admission policy for TOF/OA patients at the RCH.

Most importantly, however, will be the ability of interested users to communicate with OARA through the establishment of an online 'mail box'.

Hopefully the next edition of the OARA newsletter will come to you via the website as well.

In the meantime check out the progress on www.rch.org.au/oara/

The new email address for OARA is oara.rch@rch.org.au

After Hours Emergencies

There has been concern expressed by parents of TOF/OA patients regarding the lengthy delay/difficulties seeing medical staff when their children have required emergency treatment after hours. The OARA committee has brought this to the attention of the consultant thoracic surgeons at the RCH.

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

• 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 surgeons recommend the following course of action:

Parents should ring the RCH main switchboard on 9345 5522 and explain that their child is a patient of whomever 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 either 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.

This revised emergency treatment should eliminate a lot of pre-admission stress and hopefully facilitate a speedy recovery for any child forced to go through the emergency system.

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 $250,000.00. 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 2002 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 Cheque enclosed	$
Name:
Address:
Postcode:
Child's Name:
Mail to: The Treasurer OARA PO Box 370 Boronia 3155