Raising funds to ensure continued research into oesophageal atresia (OA) and tracheo-oesophageal fistula (TOF), the availability of specialty nurses and other patient and parent support initiatives.
Area: Australia – headquarters in Melbourne
The story so far
OARA was founded in 1980 to support the families of OA/TOF patients. The auxiliary is made up of parents and friends of children living with the condition. Key areas of focus are (1) funding research and (2) funding initiatives to support families throughout the OA/TOF journey.
OA is the term used to describe a congenital obstruction in the oesophagus in newly born babies. It is a congenital anomaly in which the oesophagus ends in a blind upper pouch. The oesophagus is commonly known as the gullet, foodpipe, and in babies born with OA this means that the gullet is not connected all the way to the stomach, and as result food and saliva cannot pass into the stomach. Quite often the baby born with OA may also suffer from a TOF, the term used to describe the condition where a section of the baby’s trachea (windpipe) is abnormally connected (that’s the fistula part) to the baby’s oesophagus.
Some babies are born with additional defects to the spine, heart, kidneys, anus and radial bone. If a baby has three or more of these anomalies, it has what is known as “VATER Association”.
Major surgery is required early in life. TOF/OA children are all different in that some may have few or no problems following their repair, whilst others have a lot of problems in their early years.
What we are working on
OARA is currently involved in funding the Nate Myers patient record database. The database details all initial patient admissions and treatment and is the biggest in the world for this condition, creating a unique record available to the medical fraternity worldwide for referral and research.
We continue to hold events for patients and families to meet, network and support each other through the OA/TOF journey.
Our newsletter is enjoyed by many of our members and is another way of reaching out to the OARA community and sharing each of our individual OA/TOF journeys.
How we can help you
Families of OA/TOF patients
Families of newborn patients at RCH Melbourne will immediately be referred to our OA/TOF nurses who will be in contact with you and will provide you with support, reading materials and vouchers funded by OARA.
Families of newborn and other patients who are located in other hospitals and areas of Australia are encouraged to contact OARA so that we can discuss how we can best support you.
OA/TOF is a lifetime journey and, together with the medical community, we are working towards improving the transition from child and teenage care to adult monitoring and care. Further details will be added as they come to hand, but please do not hesitate to contact us to see how we can best support you.
Medical and research community
If you are planning to undertake research into OA/TOF or related areas, OARA may be able to assist with funding for your project. Please contact us so that we can discuss how we can best support you.