Abbey was born in 2011 with oesophageal atresia/trachea oesophageal fistula, meaning the oesophagus had not joined the stomach and there were other ‘wrong connections’ to the lungs.
Twenty hours later, she had repair surgery and, after two weeks in neonatal intensive care, went home with parents Erin and Mat.
Now a typical toddler, the legacy of her condition remains ” she has feeding problems, bad reflux, noisy breathing and a croup-like cough because of a loose trachea, and is susceptible to respiratory tract infections.
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READ NOWAbbey also needs regular procedures under general anaesthetic to widen a stricture to improve her swallow.
Despite this, Erin said her daughter was a typical 18-month-old who was into everything, although, as a mother, she had to remain vigilant.
‘I am a bit of a helicopter mum,’ she said.
‘I cannot take my eyes off her because if she picks up a piece of bread or apple (that someone has dropped), it is a choking hazard.’
Mum and daughter attend the Miracle Babies Foundation’s Joondalup Nurture Group for play and support and Erin is the new WA representative for the Melbourne-based Oesophageal Atresia Research Association.
Erin said the groups had been invaluable as she had left hospital with no information and feeling ‘completely helpless, lost, stressed and with no-one to turn to’.
She is looking for other families to join the association, which runs through the Royal Children’s Hospital and offers an online chat group and other support.
‘Apparently there are at least 10 or more OA/TOF bubs born in WA every year, so where are they?’ she asked.
‘WA has an informal group at the moment, but we hope to meet up every couple of months and have an annual picnic or barbecue.’
To join, email mail@oara.org.au.