In 1987, I was born in the UK with undiagnosed Congenital Diaphragmatic Hernia (CDH). An hour after I was born, the midwife noticed I was going blue from lack of oxygen. After a scan, I was diagnosed with the first case of CDH the hospital had ever seen.
Within 16 hours of being born, I was rushed to a larger hospital for emergency surgery. My family were told my chance of survival was below 50%.
This must have been a terrifying time for my family as the condition wasn’t well known. Thankfully the surgery went well.
While I was in the hospital, my mum noticed the other babies in the ward had lovely soft toys so she bought ‘Olof’ the koala. He still sleeps with me every night. A reminder of how lucky I am.
After 2 weeks in the incubator at the hospital, I was sent home. CDH support groups, internet and social media didn’t exist in the late 80s. “Off you go and good luck” is how my parents worked through their CDH experience.
There were no further complications, which means I’m on the lucky end of the spectrum in terms of treatment and after-effects.
As a child I had an active disposition and developed a decent set of lungs. I was able to play sport without serious issues, other than being a bit wheezy at times.
I’ve taken my love of being active to levels that my parents must have never thought possible when I was born. I participate in ultra-marathons, cross-continent cycles, triathlons and fitness challenges. I’m also a volunteer surf-lifesaver at the famous Bondi Beach!
As an adult, I see straight through my scar and don’t even notice it in the mirror.
My family has never really spoken about CDH and being undiagnosed during pregnancy it must have been a very unexpected and scary experience. Up until last year, I didn’t know anyone else who had been diagnosed with CDH.
It’s fantastic that families now have access to information and support throughout their CDH journey. The advances in knowledge and treatment of CDH gives me great comfort.
As a CDH survivor, it was my privilege to serve on the CDH Australia Board from 2019-2021. I’m very proud to have helped to ensure that no family faces CDH alone.
Although my story has a positive outcome, this is not the case for many babies diagnosed with CDH. Let’s conquer CDH together.