Oesophageal Atresia Research Auxiliary
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Newsletter December 2003
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In This Issue |
President's Report
The last twelve months have seen a number of important projects being undertaken.
Our unique OARA patient history database is nearing completion of the data collection process. We now look forward to driving the next phase towards access and use of this data.
We are continuing our commitment to parent support through early contact with the neonatal case managers. Some of the initiatives include providing vouchers for essential needs and meeting in small groups to discuss common issues and problems.
The OARA website www.rch.org.au/oara, which was officially launched at our 2003 AGM, is now fully operational and we are developing the information provided on the site for the benefit of the local and international groups who are accessing it already.
Fund raising was again primarily achieved on our annual golf day which raised a record $10,700.00 this year. We are assisting the ChIPS group and the Burns Unit with funds for camp weekends from these proceedings.
My sincere thanks go to the hard working committee members who devote a good deal of their precious time attending one on one meetings with parents of newborns, providing much needed support when it is most needed. Also, sincere thanks to the surgeons, Neonatal case managers and the auxiliaries staff who offer their guidance and advice to assist with our endeavours.
We look forward to your continued interest and involvement and encourage you to demonstrate that support by forwarding the membership subscription/donation.
Graeme Clark
President OARA
New Research Project
The Respiratory Medicine Department is implementing a new research project for Oesophageal Atresia and Tracheo-oesophageal Fistula Patients which will relate to Tracheomalacia.
Children with repaired OA & TOF have varying degrees of Tracheomalacia (floppy/weakened part of the trachea/airway which collapses down when breathing out). Those with severe Tracheomalacia have impaired cough efficiency. Their ability to clear mucous and secretions from their airways by coughing is markedly reduced, thus increasing the development of chest infections and pneumonia.
The Respiratory Laboratory have developed a technique called 'cough spirometry' which measures the airflow achieved during coughing.
The new research involves the use of a specialised valve called a CPAP Valve, which applies pressure/resistance to the airway whilst coughing into it, thus splinting the weakened airway and keeping the tracheal wall open and so increasing the cough efficiency and movement of secretions. Measurements of 'cough spirometry' with and without the use of the valve, will be taken to assess the usefulness of this new device.
It is proposed to study 60 children with OA & TOF, with differing ranges of severity of Tracheomalacia, to describe the extent of impairment of cough efficiency and to determine the ideal resistance to optimise cough efficiency. Members may be contacted as children will need to be recruited for the study.
If successful, this project will have a significant impact on the techniques used for children with Tracheomalacia and hopefully improve the management of those with recurrent chest infections.
The project will take place over a 12 month period. OARA is helping fund the project by providing funds for a Research Assistant needed to recruit patients, perform studies and to record and analyse the data.
The 2003 OARA Golf Classic
An excellent field of 99 players took part in the 12th OARA Golf Classic played at the Box Hill Golf Club on Friday September 12, 2003.
The OARA Golf Classic realised a profit of $10,700.00, thanks to the $40.00 donation all players contribute in their subscription, the $2,186.00 raised from the raffle during lunch, and the money paid by tournament sponsors.
Winners of the 2003 OARA Golf Classic were:
| 1st: | Dean Humphries Peter Kennedy Kieran Kennedy Noel Barr |
| 2nd: | Richard MacAfee Rob MacAfee Tony MacAfee Bryce Gammon |
| 3rd: | Peter Haug Damian Lee Tony Smith |
Once again, OARA is most appreciative of the support it received from its loyal group of regular sponsors including:-
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Adams Platform (APGMC)
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R.N. Barr Sandblasting
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Clanbrooke Racing
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Infradig
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The Coodabeen Champions
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The MacAfee Family
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Wridgways The Removalists
OARA sincerely thanks those persons who arrange these sponsorships.
New sponsors for the 2003 OARA Golf Classic were - JD's Truss Company, a business run by Diane and Stephen Fisher, proud parents of TOF patient Dylan. In addition to sponsoring a hole at the tournament, Stephen also acted as Guest Speaker during the luncheon. Stephen gave a heartwarming account of Diane and his early fears when Dylan was diagnosed with OA soon after birth, and their delight with Dylan's great progress in the eight (8) months since surgery. He displayed photos of Dylan within 48 hours of birth and again at eight months, and the happy youngster looks fit enough to be hitting a golf ball with Dad before much longer.
Our thanks go to Stephen for performing such an important task in helping guests understand the role that OARA is playing in the lives of newborn patients and their families.
A second new sponsor of the 2003 Golf Classic was Independent Cranes, who were introduced to OARA by Glenn Burgess, the Dad of TOF patient Tyler Burgess. OARA is most grateful to Glenn and his Dad Neil for recommending OARA to the management at Independent Cranes, and to Lydia at Independent Cranes for her assistance in arranging the sponsorship.
OARA urges all members to recall the contribution sponsors make on our behalf, and to utilise the services of these companies whenever possible.
The OARA raffle was a grand financial success again due to the extensive array of excellent gifts garnered by OARA member John Tunstall and his staff. John has willingly adopted the role of prize gatherer in recent years, and we thank him sincerely for such an important contribution to the success of the day.
OARA was pleased to have Carol Lowen, President of RCH Auxiliaries, speak at the luncheon, and we thank Carol for the support for OARA that she expressed.
Carol Lowen (right) at the luncheon.
A venue for the 13th OARA Golf Classic has not been finalised as yet, but the date for the tournament almost certainly will be Friday September 10, 2004. Players, raffle prizes, and new sponsors are always welcome, and any assistance that members can provide in these matters would be most appreciated. Please call John Graham on 9884-5733 if you can help in any of these ways.
Oesophageal Atresia Review Clinic for Adults
The Oesophageal Atresia Review Clinic for Adults was established in April 2000, as a joint initiative of Royal Children's Hospital and St Vincent's Hospital. The clinic has offered monthly appointments for follow-up of adults who have had surgery for oesophageal atresia as infants. Dr Andrew Taylor, Dr Kerry Breen and Dr Ashley Miller, all gastroenterologists at St Vincent's Hospital have attended the clinic, with support from RCH surgeons. The work of Ms Jocelyn Brady has been invaluable. She has been conscientious and tireless in tracking down patients and encouraging them to attend, and compiling research results.
The results of follow-up are currently being compiled for a journal publication and have been presented already at the Australian Gastroenterology Week in October 2003. The results and recommendations arising from them are summarised below.
132 patients have attended for an initial consultation. All patients have been assessed by a clinical history and physical examination. Although most people are generally in good health, 47 patients (36%) need to have a soft diet or to drink fluids with food to help with swallowing. Reflux symptoms (heartburn and acid regurgitation) are also very common (83 patients, 63%).
Before April 2001, our policy was to suggest that an examination of the oesophagus and stomach (endoscopy or gastroscopy) was carried out in patients with significant reflux symptoms or difficulty swallowing. After April 2001, a gastroscopy was recommended to all patients attending the clinic. 67 patients (51%) have undergone this procedure. The important findings have been erosions, known as reflux oesophagitis (breaks in the normal lining of the oesophagus due to acid reflux) in 36 (53%) of these patients. Of these patients, 5 had severe reflux oesophagitis, which may pose a risk of more serious problems such as scarring or changes which could lead to an increased risk of cancer. 7 patients had marked narrowing of the surgery site in the oesophagus. The oesophagus has been stretched in an effort to improve swallowing in 7 patients, with dramatic improvement in 2 patients.
The most significant finding has been a permanent change in the cells lining the lower oesophagus in 7 patients who had endoscopy (10%). This change is called Barrett's oesophagus and is due to acid reflux over many years. It is important because there is a small but real risk that these altered cells can develop into cancer over years. In patients with Barrett's oesophagus, we recommend regular monitoring with endoscopy every one or two years.
The number of patients with Barrett's oesophagus or severe reflux oesophagitis appears to be much higher than in the general population. Analysis of the data indicates that almost all patients with these severe problems are men who are 35 years old or more. Most, but not all, these people had frequent heartburn or acid regurgitation. At this time, the risk of oesophageal problems in adults without these symptoms appears to be low, but there is not enough information about this group to give a definite conclusion about the degree of risk.
Based on this information, the following recommendations are now made to adults who have had surgery for oesophageal atresia as infants:
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Assessment at the Oesophageal Atresia Review Clinic for Adults is recommended in all patients between ages 20 and 30 years.
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A gastroscopy is recommended in all who have heartburn or acid regurgitation or any change in swallowing.
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A gastroscopy is recommended in all men of 35 years or older.
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In patients without heartburn, the risk of oesophageal problems appears to be low, but a gastroscopy should still be considered and will be discussed at the clinic.
Patient Profiles
Update on Claire Miller
Claire is the daughter of Di Miller one of OARA's committee members. This is an update from her last report.
"Claire is now 14 years old and leads a happy and active life. In the past four years her scoliosis has progressed to about 37 degrees where it has remained for the last two years.
At this level she doesn't require surgery but, if it begins to progress again, she may.
Claire now wears a spinal brace 24 hours a day (except when exercising or playing sport) which has its obvious drawbacks for a 14 year old as it is very hot in summer and restricts her movements.
The scoliosis also brings with it another problem. Apparently the scarring of her lungs caused by the oesphageal atresia and subsequent operations, combined with the reduced chest cavity size due to the scoliosis, has reduced her lung function to well below normal.
Although she still leads a "normal" life, it has ruled out any endurance sports and limited her potential to play the flute. She still, however, manages to dance in a dance ensemble, undertake circus training and prepare for fourth year flute exams, among many other things.
As for the future, we can only hope that Claire's health problems do not get any worse."
Di Miller
Bayden Withoos
Born on Christmas Eve Bayden was a Christmas present we hadn't expected. Arriving nearly 6 weeks early and in a big rush (the labour only lasting 3 hours) Bayden made it into the world the year before he was supposed to, he arrived Christmas Eve 2001, he was due January 30th 2002.
After such a dramatic entrance into the world, he was whisked off to the Royal Childrens Hospital and operated on that night, arriving back to the Neonatal Unit in the early hours of Christmas morning - special thanks to Mr Keith Stokes, Dr Chris Burke and all others involved for giving up their Christmas Eve/Christmas Morning to help Bayden.
Fortunately Bayden had no other abnormalities other than the Oesophageal Atresia & Tracheo-osophageal Fistula. His oesophagus had a 4cm gap and was joined that night but the join was very tight and the oesophagus narrow from the stretching. He remained intubated and paralysed for 5 days in fear that the join would fail and cause a leak if he moved. Thankfully there was no leak and Bayden was extubated and we finally got to hold our son for the first time - along with the tubing and all!!
We'd like to thank the Royal Children's Hospital Auxiliaries for the wonderful gifts Bayden received Christmas morning, Having not expected his arrival we had no present with us to give Bayden ourselves on his first Christmas. We'd also like to thank the nursing staff who looked after Bayden for making Christmas Day as special as was possible under the circumstances - we have a Christmas Card from Bayden to us with his foot print on it - achieved with some help by the nursing staff I suspect!! - something we will treasure forever. Bayden also had a visit from Santa and had his photo in the paper on Boxing Day - What a Star!!
After being told on several occasions to expect a set back in Bayden's recovery at some stage and not to expect him home until his due date at least, Bayden surged ahead with no complications at all and after only 2 days of oral feeds made it home breast feeding and before his due date!!
(3 weeks old and 2 days).
Being a Registered Nurse myself I cannot say that this helped me in coping with Bayden's operation or hospitalisation. In fact I'd say it increased my stress levels whilst in hospital and did absolutely nothing to help me when we got home.
Bayden had almost constant reflux (not in hospital- just at home!) he vomited a lot of the time - he was on 2 hour breast feeds for months and months, day and night - which he nearly always wasted half of and nearly always on me or the carpet! I was forever changing his clothes and bedding - sometimes even 4-5 times per night and not to forget my own sets of clothes!
Lack of sleep, an ever increasing pile of washing, frequent breast feeds, and the stress and worry of a first time mum with a baby who'd had a major operation at birth - I had become a walking zombie for the first year of Bayden's life. Special thanks to my husband and Josh, my 11yr old Stepson (Bayden's brother) for putting up with me for that first 12 months.
Bayden had reflux and oesophagitis requiring medication in the first 6 months. He has only required one dilatation at 9 months old. His vomiting reduced significantly and he was off his medication by 10 months old.
From 10 months of age to about 18 months Bayden was on antibiotics nearly every month for chest infections, ear infections, pneumonia and bronchiolitis. Now at 22 months of age he is a very healthy, active toddler who has been infection free for 4 months, who eats nearly everything in sight - including even our dinners. He is now in the graph for length for his age and is up near the 90 percentile in the graph for weight.
The only thing that sets him apart from other toddlers is his fantastic startling cough, and his distinct 'honking' sounds when he runs around and gets too excited - this is a result of some Tracheomalacia ( weakened part of his airway which collapses when he coughs or breathes hard). Apart from the many strange looks and concerned comments we receive everytime we go out and Bayden coughs or honks, there is nothing wrong with our very active, wilful toddler.
New Committee Members needed
OARA is appealing to parents of patients born in the last 5-10 years to consider joining the committee in 2004.
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).
Family Gatherings/support groups
Over the years one of the focuses of OARA has been to bring families of TOF/OA children together in a social setting. The purpose is for the families to get to know each other, share experiences and provide a support network.
In February 2003, approximately twelve families (all OARA members) came together at the Royal Children's Hospital for a supper and an informal chat. It was wonderful to meet the new families and to also catch up with a number of families that we had met in the Neonatal wards. After a lot of pleasant discussion, OARA President Graeme Clark spoke briefly about the committee's activities and shared the aim of providing additional social events in the future.
Following this successful get together families were invited to a morning tea at the same venue in August. One of the mothers of a recently arrived TOF/OA baby dropped in from the wards and the parents of a three week old travelled to the session from country Victoria. It was, again, an ideal opportunity for parents to meet other families who have had similar experiences with their newborn children.
The committee is now organising a picnic day at Westerfold Park in Doncaster. The date is likely to be 22 February 2004 and invitations will be sent out to all members. We look forward to meeting as many families as possible and ask that you keep this day free in your diaries.
Dedication to Mr Myers
It is with deep regret that we mourn the passing of Nate Myers who died on 7th January, 2004.
Nate was an amazing man, who together with Russell Howard, pioneered the surgical process related to the Oesophageal Atresia condition.
If not for him our children may not be with us today.
He was a mentor and founder of OARA and we have dedicated the OARA Database to him.
He will be sadly missed by the many parents and patients that he so profoundly touched.
Family man and surgeon dedicated to children
NATHANIAL ALBERT ALFRED (NATE) MYERS
PEDIATRIC SURGEON 9-10-1922 - 7-1-2004
Nate Myers was a remarkable pediatric surgeon and there can be few in pediatric surgery or indeed in pediatrics who have contributed more. His name will long be remembered by the many thousands of families he has helped and the pediatric surgeons he has influenced.
He was educated at University High School where a brilliant career was rewarded with a Commonwealth scholarship to study medicine at Melbourne University.
He graduated with honours in 1945 and was appointed a junior resident medical officer to the Royal Melbourne Hospital
In 1946 he was appointed to the resident staff of The Royal Children's Hospital where he remained for the next eight years, the last three as chief resident medical officer.
Even at that early stage of his career he was more than competent, hard working and always available, be it day or night. These qualities remained throughout his working life. Nate really cared for children, and few had his ability to relate to them and their parents.
At this time he was undecided whether to become a physician, a surgeon or a pediatric psychiatrist. He could have performed equally well in any of these disciplines but having decided on surgery he undertook extensive training at both the Royal Children's and Royal Melbourne Hospitals.
Between 1955-1957 he continued his training at the Hospital for Sick Children, Great Ormond Street, London. It was here that he met and married his first wife Anne. Together they had four children - Jane, John, Carolyn and Richard.
Returning to Australia he joined the senior staff of the Royal Children's and remained there for more than 50 years variously as surgeon-head of unit, chairman department of surgery, senior surgeon and after retirement, senior consultant surgeon. He also held consultant appointments at Fairfield, Box Hill, Royal Women's, Mercy Maternity and St. Francis Cabrini hospitals throughout his career.
In 1957 he began private consultant practice. He was a superb consultant and a particularly able diagnostician. He demonstrated this on numerous occasions, at times to the chagrin of the referring doctor.Yet Nate was always generous and courteous in dealing with other doctors, and particularly reassuring to parents during anxiety-provoking and at times difficult situations.
His care was total and his own referrals appropriate even when he was often capable of managing non-surgical disorders himself.
In recognition of his work with sick and handicapped children, Nate was awarded the honour, Member of the Order of Australia in 1981.
Although experienced in most areas of pediatric surgery, thoracic surgery was his particular area of expertise. He was involved in surgery of the heart in the early development of the speciality, but he will be particularly remembered for his monumental work on oesophageal atresia. Along with the late Russell Howard, he was one of the pioneers in the surgery of this condition, and a world authority.
He always enjoyed teaching, particularly at the post-graduate level. The Melbourne University department of pediatrics recognized this skill and he held the title professional associate through much of his working life. He was still teaching late into his 70's.
There is no doubt that the Royal Children's Hospital was his great love. He visited almost daily and, apart from his surgical commitment, he was a member of many sub-committees and chairman of Senior Medical Staff. He was a superb organizer and 16 years ago set up the RCH Medical Alumni Association and remained its' secretary until one year before his death.
He was also very active in the Royal Australasian College of Surgeons, as a founder member of the Board of Pediatric Surgery , chairman of the Victorian State Committee and chairman of the Archives Committee.
He lectured extensively overseas and held honorary memberships of pediatric surgical societies in many countries. His contribution to the literature was enormous. He edited or contributed to at least a dozen books, wrote alone or in association with colleagues more that 70 scientific articles and was editor of major international surgical journals.
But life was not all work. In his earlier years he loves a party. He played good tennis and was an avid cricket fan. But it was watching his beloved Geelong football team in action with his son John that he really enjoyed.
In later life he married Julie Nicol, and with her sons James and Stuart he enjoyed a wider family for 16 years. Julie gave devoted support to Nate in his chronic illness and particularly during the last year of his life.
Max Robinson was a long-term colleague and friend of Nate Myers. This was written with the assistance of Nate's children and Durham Smith, a surgical colleague.
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:
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Strictures/narrowing needing immediate attention
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Food becoming stuck/lodged in the oesophagus
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Problems with gastrostomy tubes - leaks, falling out, blockages and infections
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Problems with oesophagitis or gastritis needing immediate attention
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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 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.
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.
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 $300,000.00. 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 2004 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 |