Heather was born in 1967 with oesophageal atresia. This caused a number of challenges throughout her life, including difficulty with swallowing, aspiration (food going into the lungs), and the need for regular medical procedures.
Despite these challenges, Heather has lived a full and productive life. She has a career, a family, and a strong sense of community. She is an advocate for other people with oesophageal atresia, and she hopes that her story will help to raise awareness of the condition and improve the support available to adults with this condition.
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Video transcript:
Hi. My name’s Heather. I was born in 1967 with oesophageal atresia, long gap.
In the 1960s, my parents struggled. I was taken from birth to a hospital four hours away. Mum was given tablets to dry up her milk and there was no understanding or support systems.
This lack of support continued throughout my childhood into adulthood. And unfortunately in Australia, now as a 55 year old woman, for me there seems to be still a lack of understanding, knowledge and support of OA/TOF.
I’ve had a full life. I’ve had a career. I’m a mother, a wife, and my daughter is healthy and I’m thankful. However, being born with oesophageal atresia has meant life-long decisions every day.
I had medication that I take every day. I have to be careful with my swallowing and avoid certain foods. Dilatations and scopes every three years, and lifelong sleeping raised so I don’t aspirate.
My gastric pull-up repair is now 55 years old. It’s wearing out. My motility is slow. Aspiration is worse when I sleep. And I have now been diagnosed with Barrett’s oesophagus.
Eating and sleeping are the two main human needs of life but for us TOFs, eating and sleeping can be the most difficult things in our life. Last year I applied for a medical bed to the government to sleep raised, to help with my reflux and because we were really concerned about my Barrett’s diagnosis. I was told by the government system that because I could roll over in bed and because I didn’t fall out of bed I didn’t qualify.
There seems no acknowledgment or understanding of oesophageal atresia still.
There are no support systems for me as an older adult. I’m hopeful that this short message will instigate some change. Paediatricians do amazing things with babies today. The medical advances are incredible. And there’s now talk of transition into adulthood. However, I really want to highlight that adulthood isn’t just 18 years of age.
We need experts and a voice for old age care for oesophageal atresia and I’m hopeful that this video can help bring change for the adults of the future.
Go TOFS!
