WELCOME
This website has been created to provide support, information and linkages to people who were born with, or parents of, children with an Anorectal Malformation (ARM)/Imperforate Anus (IA) living in Victoria, Australia.
What is ARM/IA?
An imperforate anus or anorectal malformations (ARMs) are birth defects in which the rectum is malformed. ARMs are a spectrum of different congenital anomalies in males and females, that varies from fairly minor lesions to complex anomalies.
Credit to Holschneider, Alexander Matthias; Hutson, John M., eds. (14 November 2006). Anorectal Malformations in Children: Embryology, Diagnosis, Surgical Treatment, Follow-up. Springer. pp. 1–. doi:10.1007/978-3-540-31751-7. ISBN 978-3-540-31750-0. Retrieved 15 September 2013
Who understands?
ARM affects 1:5000 births and that is represented by around 15 children born every year in Victoria.
From 2000-2016 there were 253 children treated through Neonatal Unit at RCH (King, S), and that shows us that there are many families that could benefit from connecting with each other.
Who can join?
Parents of children or adults born with an Anorectal Malformation, no matter the presentation or underlying diagnosis. Whether it is DiGeorge Syndrome, Downs Syndrome, VACTERL Association, Persistent Cloaca, Currarino Triad etc, everyone is welcome. Members are living in Victoria or Tasmania.
What's next?
You may have found us by referral from the RCH, Google, or word of mouth. The important thing is that you are not alone and there is support available.
This is all facilitated through a Facebook group and is not connected to the Royal Children's Hospital.
People should understand that any advice offered is said from personal experience and should not replace that of your treating doctor.
How would it be helpful?
Many parents of kids and adults living with ARM feel isolated, frightened, and distressed at times, especially when managing stomas, diet, continence, skin integrity, mental health etc, and that's why we are here for you. The aim of the group is to provide information, peer support, practical skills and care to others who have walked a similar journey.
Currently there are around 40 families and a few adult members with IA in the group and we are always looking to find more people to join our community.
Some children have formed friendships and this has challenged their perception that they are the "only" one, some parents find comfort in seeing older children, and many adults are willing to talk about their experiences and assist parents in understanding the lived experience which is invaluable.
The members of the group will often meet informally, such as 1:1 for coffees when people have coinciding appointments or admissions, we also have meet and greet groups approx 1-2x per year, often somewhere close to RCH for convenience, and provide phone support to each other occasionally.
No joining fee or money is exchanged, all is done from goodwill and 'giving forward'.
How do I join?
There are a few different ways :)
The Victorian ARM Groups runs as a closed group on FB. This is to provide privacy to its members. Given the nature of the subjects discussed, all members are thoroughly screened to ensure that everyone in the group feels safe and there are a series of questions that you will be asked when wanting to join.
There is a also a public page that provides a chat option to the Admin of the closed group. https://www.facebook.com/VictorianARMSupportGroup/Â
Alternatively, there is an email address, whereby contact can be made to facilitate entry:Â
e: vicarmsg@yahoo.com
What if I am not on Facebook?
You can still be involved in the group outings such as picnics and have the opportunity to meet other parents with kids or adults born with ARM.
It is preferable that you do join FB to get the most out of the group, make friends, ask questions and perhaps even find someone not far from you.
Vic ARM Catch-up day Sun 14/1/2018 from 10.30 am
Wanna come and meet others?
Set next to the famous Ian Potter's Foundation Children's Garden at Royal Botanic Gardens, we are going to have a BYO picnic at the Western Lawn,so that we can pop across and play at our leisure. (No picnics in the actual kid's garden unfortunately).
Bring all the stuff you will need, chairs, picnic food, hats, sunscreen and bathers for the kids. It would be great to get as many folks as possible to strengthen our ties, put faces to names and meet new friends.
Consider bringing any unused equipment with you if you would like to trade, sell or gift to other members.
https://www.rbg.vic.gov.au/visit-melbourne/plan-your-visit/getting-here
https://www.rbg.vic.gov.au/visit-melbourne/attractions/children-garden
https://www.rbg.vic.gov.au/documents/RBGV_Melbourne_Brochure_Map.pdf
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To RSVP, please send an email to vicarmsg@yahoo.com by 10/1/18
More information on ARM/IA
Links
What is ARM?
http://www.nationwidechildrens.org/anorectal-malformations-imperforate-anus
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1971061/
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​https://pedsurg.ucsf.edu/conditions--procedures/anorectal-malformation.aspx
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Information on Appendicostomy/MACE
http://www.disabledliving.co.uk/DISLIV/media/promocon/ARMS/Malone-Information-Document-PDF.pdf
Good overview of caring for an IA child (although from USA and published 2007)
http://karen-iadoc.tripod.com/project.htm
Interesting Q&A on ARM
https://www.youtube.com/watch?v=si1SfthUnRM&feature=youtu.be
Group details again: Victorian Anorectal Malformation Group
https://www.facebook.com/groups/VicIAGroup/
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