Oesophageal Atresia Research Auxiliary
RCH > Affiliated Organisations > RCH Foundation > Oesophageal Atresia Research Auxiliary- About OARA
- What is Oesophageal Atresia?
- Research
- Adult clinic
- Newsletter
- How to help OARA
- Mailing list
- Events
- Links
- Contact us
Print version
Newsletter December 2001
|
|
 |
In This Issue |
Annual General Meeting
The 21st Annual General Meeting of OARA was held on March 26, 2001, at the Royal Children Hospital.
OARA President Graham Clark reported that the Auxiliary again had a productive year with the Adult Clinic and Parent Support being the significant highlights.
RCH Auxiliary Service Awards
John Graham and Rod Cole, both founding members of OARA were awarded RCH Auxiliary Service Awards, for 20 years of service to the Auxiliary.
Between them Rod and John have held every position on the OARA Committee and have been outstanding fundraisers and committee members. They have earned and maintained the respect of the medical staff, patients and fellow parents through their tireless dedication.
We are proud to honour and recognise their endeavour and their many years of involvement.
Guest Speaker
Dr Russell Taylor spoke with great knowledge and empathy about the difference between short gap and long gap OA. He provided excellent insight into the management issues relevant to each condition. His very informative speech highlighted, yet again, how fortunate we are to have such gifted people looking after our children.
Vale GEMMA CHAMINGS
October 28, 2001
Julie and Alan Chamings are the parents of OA patient Jesse, and were for a long time hard-working committee members of OARA.
On October 28 last, Julie and Alan’s daughter Gemma, a cystic fibrosis sufferer and RCH patient like Jesse, passed away after a long battle with her illness.
Committee members who knew Julie and Alan wish to record their sincere condolences to all members of the family on their sad loss. Occasionally in recent years we have met Julie and / or Alan with Gemma at McDonalds after committee meetings when Gemma was in for treatment, and we were always impressed by the vibrancy of Gemma’s smile and the constant care and love that her family provided her.
On behalf of all members of OARA, we pay tribute to Gemma and send our loving support to Julie and Alan, and to their children Tash, Jade and Jesse.
Request for assistance from TOF Parent
The OARA Committee recently received the following letter from Canberra mother Anita Taglieri who is seeking contact with any parents of OA children who may be able to shed some light on the difficulties she has in feeding her daughter, Tina. Anita’s letter highlights the problems parents face when raising a TOF child without the support of a centre such as the RCH, and we know how much Tina would appreciate contact from TOF parents at this time. We commend her letter to our readers, and hope that someone may be able to assist with personal experience or support at this time.
Anita’s address and contact details are at the bottom of her letter.
“Thankyou for your email. I feel a lot better knowing that there is somebody out there close by to help with questions that I have.
Tina is 2 1/2 years old and still being fed by gastro tube. She is still not feeding much through the mouth. I try lots of different foods but she does not seem keen on it, or if I do get it in her mouth she sometimes leaves it sitting in her mouth. Then I have to get my finger to pull it out. She is crawling but not quite keen to walk yet. She is also developmentally delayed a bit. I have been seeing a speech pathologist, physiotherapist and occupational therapist since she was 3 months old. I don't seem to be getting too far with them, and am in the process of trying to find somebody else who has dealt with TOF children.
Also, Tina is on omeprazole 2mls per day and also on neocate special milk formula. When I have challenged her with cows milk she gets constipated so then I tried soy milk which gives her the runs. It seems to be a bit of a problem for the dietitian to decide what to do as the neocate milk should only be used until she is 2.
Tina has had blood tests done recently and has been found to be needing hormone injections everyday until she is 13years or older. I will be starting that next week.
I would appreciate if you could help me with any information about developmental delays - what foods to try and get any information that you have. I would appreciate it. I know that every child may be different but sometimes some positive feedback makes a lot of difference.
I would also be happy to be involved in your group and am happy to pay any membership fees for the committee and try to come to a meeting if possible.
My address is 30 Conway Street, Queanbeyan New South Wales 2620, and home phone number is 02 62979251.”
The 2001 OARA Golf Classic
The 10th Annual OARA Golf Classic was played at the Waverley Golf Club in Bergins Road, Rowville on Friday October 12, 2001.
A field of 61 players contested this years tournament, the smallest since the first OARA Golf Classic back in 1990. The loss of players was due largely to the withdrawal of the tournament’s long-time sponsor, Promotif, who normally enter up to 32 players.
Nevertheless, the day was a most successful one, raising a total of $6014. With OARA currently in a financially sound position, tournament organiser John Graham suggested to the OARA Committee that the proceeds from the 2001 event should assist other worthwhile groups within the RCH.
To that end, the $6014 profit was presented to the Burn Unit and the CHIPS Group ( Chronic Illness Peer Support ). Both groups conduct specialised summer camps for Children’s Hospital patients, and the OARA funds will enable essential transport and specialised staff costs for the camps to be met.
This excellent result would not have been possible without the generous financial sponsorship support of the following companies:-
- Macafee Investments Pty Ltd
- The Coodabeen Champions
- Highvale Volleyball Club
- Wridgways The Removalists
- Melbourne Bolt Company
Thanks to the support of the following companies who provided gifts for spot prizes and raffle stock, the OARA raffle raised $1300.00, a terrific boost to the profit outcome of the day.
- Cadbury Schweppes
- Rebel Sports
- Corporate Express
- Wantirna Health and Squash Club
- Deloitte Touche Tohmatsu
- Primus Telecom
- McWilliams Wines
- Tunstall Plant Hire
- The Nathan Group
- RDM Fashion Marketing
- Village Cinemas
- Golf Works
- Le Meridien at Rialto
- Allcomnet
- Knox Tavern
The winning foursome at the 2001 OARA Golf Classic were Richard Macafee, John Scalzo, Brian Joyce and John Hayes, whose score of 65 off the stick returned them a Nett 55.25 result, ahead of the Dean Humphries group on Nett 58.75, and third placed David McKenzie group on 59.625.
OARA thanks all players, sponsors, and volunteer helpers whose contributions made the 2001 OARA Golf Classic yet another success story. At this time, the venue for the 2002 tournament has not been determined with negotiations continuing at a number of clubs, but the date is expected to be Friday October 11.
The organising committee for the 2002 OARA Golf Classic are seeking a major sponsor to support the event in a manner similar to the Promotif arrangement which existed for a number of years. The tournament is one of the RCH”s well respected fundraising events, and provides the perfect showplace for a company to associate itself with the RCH and its own clients.
Sponsorship costs start at $500.00 per hole for advertising, and may be tailored to suit the needs of a company. The committee would appreciate any assistance that OARA members might be able to offer in introducing a company or companies to the OARA Golf Classic. Thank you.
For further information,
please contact tournament organiser
John Graham on 9884 5733
Parent support
The OARA committee with the support and assistance of the RCH Neo-Natal Care Managers have made contact with the parents of newborns over the last 12 months. The reaction and response has been most encouraging and we feel that it is most worthwhile to make contact in the early stages to demonstrate that there is a network of support available with parents who have experienced the ups and downs that are characteristic of this complaint.
Also, with the support of the Care Managers we have visited the Monash Medical Centre in an endeavour to expand our parent support network and promote the work of OARA. The response has been positive and we will work towards developing closer links with staff and parents. We already have as active members a number of parents whose children were treated at Monash Medical Centre.
As a matter of interest, as at December 2001 we have not had an OA newborn at the RCH for 9 months.
The Nate Myers Tribute Dinner
On Wednesday August 15, the OARA Committee sponsored a Tribute Dinner to Mr Nate Myers at The Point Restaurant, Albert Park. The 46 guests included former patients, OARA committee members down the years, and surgical and nursing colleagues of Nate’s.
Nate Myers is now retired from active surgery at the RCH but his career caring for children with Oesophageal Atresia at the RCH spans the entire period since the first survival in 1949.
The formation of OARA in 1980 was the brainchild of Nate and Diane Carter-Pollard, mother of OA patient Vaughan. In the 21 years since, Nate has provided constant direction and support for OARA, and has in recent years initiated the compilation of a data base of case histories of all patients treated with OA at the Royal Children’s Hospital.
The OARA committee are well aware of the debt of gratitude OARA owes to Nate, and the Tribute Dinner provided an ideal setting to record our appreciation of his professional excellence, leadership, vision, and wisdom. Among the speakers to toast Nate were Diane Carter-Pollard, John Scalzo, Graeme Clark, and surgeons Keith Stokes and Alex Auldist, each painting their own glowing portion of the Nate Myers’ story as they had experienced it.
A constant theme that ran through all tributes was the example Nate set over the years in his care and concern for not only the patients he treated, but for their families as well. Dianne Carter-Pollard and John Scalzo both spoke of the warmth and strength of Nate’s personal support in the difficult times they experienced during their children’s recoveries.
Alex Auldist endorsed this sentiment when he said that Nate had set a benchmark in patient-family care at The Children’s, and that those who followed him into the profession had learnt their caring principles through his example.
Keith Stokes, commenting on the very successful first year of the Adult Clinic at St.Vincents Hospital, reminded the audience of Nate’s influence in OARA becoming involved in the establishment of the Clinic.
In the next few months, OARA plans to appoint a researcher to complete the Data Base Project which Nate and his nursing assistants have started. President Graeme Clark announced that it was the wish of the OARA committee that the data base be named “The Nate Myers Oesophageal Atresia Data Base”. The Data Base, when completed, will become a unique record of oesophageal atresia information about an entire population of RCH patients, and as such will be available for researchers world-wide to utilise.
Graeme also presented Nate with a gift for him and his wife Julie, who was unable to attend.
In his reply, Nate accepted with modesty and dry wit the tributes and congratulations bestowed on him, expressed his great satisfaction at the success of OARA, and agreed
to continue his role as adviser on the Data Base project on behalf of OARA.
The committee wishes to thank all guests for their participation in this important and very successful event, and Nate in particular for his commitment to OARA.
Postscript:
 |
| Nate Myers, left, with a former patient. |
"Thank you very much for inviting me to attend the dinner in honour Of Nate last Wednesday. I thought later that no-one mentioned that Nate was the person behind the introduction of child restraint belts and seats in cars. Nate worked hard for this and it was with his persistence that these became law, firstly in Victoria and later in other Australian States – maybe this could be added to Nate’s “honour” list.
Thanking you once again, yours sincerely, Kate O’Connor. "
OARA thanks Kate for bringing this to our attention, and giving us yet another insight into the many achievements of Nate throughout his outstanding career.
Oesophageal Atresia Review Clinic For Adults
The following is a summary of the activities and results to date of the clinic which is a joint initiative of The Royal Childrens Hospital and St.Vincents Hospital funded with support from OARA.
The clinic has now been running for 18 months, and is held on the second Tuesday of each month, from 7.30 to 9am, at St Vincent's Hospital. Dr Andrew Taylor and Dr Kerry Breen attend the clinic, with support from an RCH surgeon. The work of Ms Jocelyn Brady has been invaluable. She has been conscientious and tireless in tracking down patients and encouraging them to attend.
The role of the clinic is twofold. The major focus is to provide a service to patients who may have ongoing symptoms and medical needs, related to oesophageal atresia. For example, many patients have had quite severe problems with gastro-oesophageal reflux and heartburn. Others have had difficulty swallowing. The second aim of the Clinic is to provide research information on the long-term outcome of patients. We have been pleased to find that on the whole, most people are doing extremely well, with only a minority having serious medical problems.
For a number of people the Clinic has made a big difference. Some patients have severe heartburn and swallowing problems, but have never got around to seeking medical attention. Patients first undergo an assessment with an interview and examination and sometimes with examination of the oesophagus with gastroscopy. With appropriate treatment, many patients have experienced dramatic improvements in their health. It has been encouraging to find that no one has had really serious problems, such as cancers
There is now sufficient information to provide some preliminary results of our follow-up of adults who had surgery for oesophageal atresia as infants. Sixty 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, 37 of 60 (62%) experience dysphagia (difficulty swallowing). 22 patients (37%) need to drink fluids with food to help with swallowing. Reflux symptoms (heartburn and acid regurgitation) are also very common (38 patients, 63%).
Our policy to date has been to suggest that an examination of the oesophagus and stomach (endoscopy or gastroscopy) is carried out in patients with significant reflux symptoms or difficulty swallowing. This procedure is performed as a day procedure, under a light anaesthetic, by Dr Taylor or Dr Breen- 38 patients (63%) have undergone this procedure. The important findings have been erosions (breaks in the normal lining of the oesophagus due to acid reflux) in 21 of these patients and marked narrowing of the surgery site in the oesophagus in 8 patients. The oesophagus has been stretched in an effort to improve swallowing in 4 patients
The most significant finding has been a permanent change in the cells lining the lower oesophagus in 7 patients who had endoscopy. 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 these patients, we recommend regular monitoring with endoscopy every one or two years.
The number of patients with Barrett's oesophagus appears to be much higher than in the general population. Because only patients with symptoms have undergone endoscopy to date, it is not known whether those patients without reflux symptoms are at risk. It is very important to find this out, to help decide on future recommendations for patients,
Two developments to the clinic were decided on at a recent meeting between the RCH surgeons, Dr Breen and Dr Taylor, Firstly, a third gastroenterologist, Dr Ashley Miller, will attend future clinics to speed up the process of seeing all adult patients who wish to attend. Secondly, all patients will now be offered endoscopy, for the reasons above. Patients who have attended previously but did not have this procedure will also be contacted and offered endoscopy. These changes should allow us to complete the initial follow-up programmes within the next 18 months and provide important information to help guide future recommendations..
As reported previously this Clinic is a most important initiative for a number of reasons. Firstly, it enables adult patients to be reviewed by experts who have the benefit of the patients past medical history from the RCH and if necessary receive care to assist or improve their quality of life. Secondly, it will provide a unique study data base to improve initial and ongoing care for all Oesophageal Atresia patients.
Any adult patient, no longer in the care of the RCH, who feel they may benefit from a visit to the clinic should contact Jocelyn Brady Ph.9889.3701 to arrange an appointment.
Adam Is A Dad
Exactly 26 years and 4 days after the birth of his father (OA patient Adam Clark) Nicholas Adam Leslie Clark was born. Nicholas weighed in at 4 kgs, over twice the weight of his dad and with much less drama, especially for Nana and Pop Linda and Graeme Clark.
Any families interested in a weekend away?
The OARA Committee has been considering organising a weekend away for OARA families for some time, and we thought that we would seek your reaction before going ahead.
The intention would be to nominate a weekend and a venue, provide details regarding accommodation, and allow families to make their own accommodation arrangements. Once in attendance, we would do some mixing over mealtimes, the children could play together, families could go off and do some sightseeing, and the group could perhaps get together at night in a community hall at the venue. In simple terms, just an opportunity for OARA folk to pass some time together, and for families to have a weekend away. Some families might attend the venue for both Friday – Saturday nights, while others might only attend for Saturday night. It’s up to you.
An example could be :
Destination : Ballarat
Venue : Lake Wendouree Caravan Park
- look it up on the web at www.Ballarat.com/lwtp.htm
Date : April 20 – 21
Things to do :
* Book in at the “Blood on the Southern Cross” sound and light show at Sovereign Hill.
· Play golf at Creswick GC
· Walk around Lake Wendouree
· Play tennis at the camp ground
· Meet other families
If something like this is of interest to you, please be kind enough to return your details immediately, and we will contact you by phone to confirm whether the weekend will proceed. Thank you.
Required Details
Family Name
An indication that you and your family would be interested in attending an OARA weekend away in 2002.
Number of persons who would attend
Contact Phone No.
Please forward to :
John Graham
5 Eastcote Court,
Vermont South 3133
Phone : 9884 5733
ELLIE CUSHION
Hi fellow OA readers. My name is Ellie Cushion and I live in Ballarat with my mum, dad, brother Kyle and sister Leah.
When I was born on 30.07.99 I threw my family into complete turmoil, as I had OA and had to be transferred to the RCH in Melbourne.
I was very small (5 lb 1oz) and 6 weeks premature. The day after my birth I had an operation to tie off a fistula between my oesophagus and trachea. At the same time I had a gastronomy tube inserted into my stomach for feeds. This all went well I am told, but mum and dad were very upset and worried for me.
My doctor told my folks that I had a long gap in my oesophagus and I had to wait for 9 weeks to see if the two ends of the oesophagus would grow. During this time I enjoyed my feeds and gained weight and my oesophagus did grow 1cm. I also had to be suctioned every 10-20 minutes, which mum and dad learned so that I was able to go on short walks around the hospital, which I loved. Finally I was ready for my joining operation. This went Ok but the join was very tight and the possibility of a leak was on the cards.
I was on ventilation and drugs to paralyse me to prevent strain on my newly joined oesophagus. Slowly I improved and I didn’t have any leaks. Yeah!! I enjoyed my first oral feed and, after a lot of persistence from my nurses, I began having feeds from a Haberman’s bottle. On 11 November 1999 I went home after 3 and a half months in hospital. My family was so excited to have me home.
After 4 weeks at home I started to vomit blood. I returned to the RCH for my first dilatation. Following this I no longer took oral feeds or sucked my dummy. I was having a lot of reflux. In two weeks time I started vomiting blood again and had to have another dilatation as well as a Nissen Fundoplication. I spent a further 3 weeks in hospital due to some complications following the operation. That is, a wound infection, wound breakdown and a further trip to theatre to resite my G-tube.
When I got back home mum and dad were determined to get me settled. My wound healed and I had continuous feeds overnight until I began to tolerate the volumes of feed again. I have not looked back since then. I was able to take increasing amounts of solids from 5 months on and mum tried every type of cup, teat, bottle and drinking apparatus she could find to get me to drink. Finally I would drink from a straw and still do. Gradually I started to cut out G-tube feeds the more I ate and drank. By 14 months of age I stopped these feeds altogether and at 16 months I had the tube removed.
Now I am 19 months old and am very active. I love to run, climb, dance, swim and explore outside. I am a real favourite at my health centre and at the kid’s school. Of course, I love to be the centre of attention. I am very funny and a great mimic. Mum and dad don’t cry around me anymore, they are to busy laughing at me.
My scars are fading but I still love to show them off. I really give my sister and brother a run for their money and I tend to get away with a lot, especially in the lolly aisle at the supermarket. Chocolate is my favourite.
The family and I are especially thankful to Mr Keith Stokes for his honest and friendly approach to my care and, of course, the fantastic staff on the neonatal unit. We are also grateful for the research into OA. I now drink 600mls a day and eat almost everything except for fresh bread. Mum and dad are feeling lees stressed these days and life is pretty good again for the Cushion family.
Cheers
Ellie Cushion.
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.
Parent Support And Contact Line.
Listed below are contact details of the current committee members together with details of their OA / TOF child where applicable.
We invite you to contact any member you may feel an affinity with. Each member will be delighted to receive your call or correspondence and will willingly share their experiences with you, as well as offering reassurance and support.
Being the parent of an OA/TOF child can at times be very difficult. Please take advantage of the support offered.
If you would like a member of OARA to contact you, please phone Lisa Hawley 9345 5113
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 |