The Performance of Life: Navigating Congenital Glaucoma

Just days after Abbie’s birth, a perceptive midwife noticed something unusual about her eyes – they appeared cloudy. This early observation led to immediate medical investigation and a diagnosis of congenital glaucoma. By the time Abbie was two weeks old, she had undergone trabeculectomies on both eyes; critical surgical interventions that would ultimately preserve her vision.

“I don’t actually know the full details of my early medical history,” Abbie admitted. “I’ve learned bits and pieces over the years, mostly through conversations with my parents and specialists.”

Notably, Abbie’s younger sister was also born with glaucoma, though her diagnosis and subsequent treatment came even earlier, resulting in a potentially less significant impact on her vision.

What makes their cases particularly intriguing is the apparent lack of genetic precedent in her family. “There’s no one on either side of the family that we know of who had glaucoma,” Abbie explained.

This medical mystery has led her family to participate in numerous genetic studies, hoping to one day understand the origins of their daughters’ condition.

What makes their cases particularly intriguing is the apparent lack of genetic precedent in her family.

Navigating Childhood and Education

For Abbie’s parents, bringing up two babies with congenital glaucoma was nothing short of emotionally challenging.

“When we were out, Mum tells me people would say to her, ‘Oh hasn’t she got the most beautiful eyes – wow they’re incredible’ and all the time Mum would be thinking, ‘yes, but I’m not sure how well they’re going to work’,” Abbie explained.

“Dad was always the one to take me to have my pressures checked and take me for operations, because it was too emotionally hard – too upsetting – for mum.”

However, at 18 months old, when Abbie was fitted with her first pair of glasses, her mum realised the determination in her daughter’s character. “When I could suddenly see the world a bit more, and interact with it a bit more, Mum said that was the end. There was no relaxing after that, I was unstoppable.”

From there on in, Abbie’s parents adopted an approach of normalcy and opportunity. Rather than treating her visual impairment as a limitation, they encouraged Abbie and her sister to participate in every activity that interested them – from ballet and netball to calisthenics and beyond.

On an academic level, Abbie’s primary school was instrumental in ensuring she had all the opportunities to reach her potential. Through organisations like CanDo4Kids, a leading disability service provider, she received additional classroom support. She was taught touch typing early-on, was provided with a laptop in years six and seven and “I just had things printed in a bigger font”.

Other than being teased about her “coke bottle” spectacle lenses, Abbie said, “I was never treated as disabled or different. I was still in all the sports teams. I was still involved in everything. And because I wore glasses,

I just had to be a bit more careful about catching the ball with my face, because it hurt!”

It’s Taken a Village

Alongside her parents and school, Abbie credits the consistent care of her specialist healthcare providers for helping her to enjoy a well-adjusted childhood.

She fondly remembers her eye specialist, Dr Theresa Casey, who treated her from age two to 20 and although her communication style was “more technical than personal”, Abbie appreciated the consistency and expertise.

“She was brilliant at the medical aspects; intellectually exceptional,” Abbie reflected. And, while most of the discussion at appointments was directed at her parents, she said she was always given age-appropriate information in a way that did not cause her alarm or stress.

“My specialists have all been amazing… I’ve kind of enjoyed all the surprises of learning about glaucoma as I’ve become able to understand it and at my own pace.”

The Challenges of Today

Today, Abbie’s visual profile is complex. She is highly myopic, with a prescription of -12D and lives with the additional challenges of nystagmus and astigmatism. Day to day, she wears rigid gas-permeable contact lenses or glasses and said, “I can see fine; I can do everything I need to although I struggle reading menus and seeing signs at cafes. I’m fine driving but I find it fatiguing so I don’t drive at night – or I avoid it if I can.”

Abbie’s partner has become an essential support, learning to anticipate her needs, and, she said, jumping in to help when she needs more lighting, to rest her eyes from contact lens wear, or to take a break from driving.

Fortunately, Abbie’s medical management is also relatively straightforward. Regular pressure checks and specialist consultations every nine months form the core of her ongoing care. Her long-term prognosis remains uncertain, a characteristic common with congenital glaucoma.

“I don’t actually know what will happen… They’ve never told me there’s a definitive progression. Because congenital glaucoma is rare, and damage occurs differently in everyone, they’re essentially watching and waiting.”

From Dance to Disability Arts

Without realising it, Abbie’s career has been propelled by her visual experience. A professional dancer and circus performer, she commenced her career with the world-renowned Australian Dance Theatre’s Youth Ensemble. In 2014, she relocated to Belfast in Northern Ireland to fulfil her dream of working with the comedic dance theatre company ponydance, becoming a member for two years.

Returning to Australia, Abbie began to explore how her unique perspective could inform artistic creation. Starting out by creating performances that challenged perceptions of ability and sight, she also worked with breakdancers and circus performers and was a founding member of the all-female Yuck Circus, which performed at the Edinburgh Fringe Festival in 2019.

“My interest around making shows is exploring what you can and can’t do with sight – working with circus performers and getting them to do things on a trapeze or up in the air blindfolded, and challenging breakdancers to do breakdancing with their eyes closed or wearing a blindfold.”

Today, Abbie is the Artistic Director and founder of the inclusive dance and circus company Blindful, and she also works with Access2Arts in Adelaide, in a role that bridges her personal experience with professional advocacy, supporting people to live better with their disability and ensuring arts organisations become more inclusive.

It’s only been in the past 10 years that she has started to wonder whether her approach to dance is different because of her eyesight.

“I wonder if I’m better at dance because of my eyesight, because I have to focus more internally rather than externally. So, it’s informed what kind of art I’ve made, but I don’t think my eyesight informed what I did or was able to do growing up,” she observed.

… it’s informed what kind of art I’ve made, but I don’t think my eyesight informed what I did or was able to do growing up

The Congenital Question

It’s easy to assume that having lived with congenital blindness, Abbie may have been reticent about having children of her own. However, she said her personal journey helped her overcome some of her fears.

“I think it was tricky… because we don’t know the genetics around it, and my partner doesn’t have amazing eyesight either. So, we were like, ‘oh, is the baby going to be alright? Is he going to have glaucoma?’

“But I wasn’t worried too much because I’ve got really amazing eye specialists around me. And so I was talking to them throughout the whole pregnancy, talking to them about what to look out for… and I think it became just one of the many ‘what ifs’ when you have a kid.”

Once Quinn was born, Abbie said she was “very proactive about having his eyes tested quite early on” and the checks continue.

“My dad comes along as support for me now – having been there so many times before, he’s way better at handling the stress than I am,” she said.

To date, Quinn has not shown any signs of glaucoma but having worked in the low vision and blind community Abbie is confident that “if anything were to happen, he will be fine”.

Accessibility and Awareness

There’s little that Abbie said she would change if she had her life over. However, one thing would be to generate broader societal awareness about accessibility. She points to everyday challenges like illegibly small menu fonts, unreadable social media captions, and digital interfaces that don’t consider visual diversity.

“The biggest thing is just general access to life,” she said. “Why make something so difficult that no one can see it?”

But aside from that, Abbie Madden’s journey with congenital glaucoma is not a story of limitation, but of possibility. Her life demonstrates that with early intervention, supportive healthcare, and a resilient mindset, visual impairment need not define one’s potential.

For our eye health community, her story is a timely reminder that behind every medical record is a rich, complex human experience – full of ambition, adaptability, and extraordinary ordinary moments.