With each goal on the soccer field and day spent in the classroom, six-year-old Teddy proves vision extends beyond what the eyes can see. Despite being classed as low vision, Teddy sees the world through a lens of unwavering determination, refusing to let his sight define his limits.
Teddy was just one week old when he was diagnosed with congenital cataracts in both eyes and came into the care of The Children’s Hospital at Westmead (CHW).
The cataracts meant the lenses of Teddy’s eyes were cloudy at birth, making it difficult for him to see. He was also born with mild microphthalmia, an eye abnormality where the eyes do not develop fully before birth, making them smaller than usual, and persistent foetal vasculature (PSV), a rare developmental disorder of the eye.
Six weeks later, Teddy was undergoing his first cataract surgery. Under the care of Dr James Smith, Paediatric Ophthalmologist, and the ophthalmology team at CHW, Teddy had a bilateral lensectomy to remove his damaged lenses.
Teddy was then given his very first pair of glasses.
“When cataracts are removed, the eye(s) are left without the ability to focus, which requires correction as soon as possible. For Teddy, this was done using a combination of contact lenses and glasses with high-powered lenses called aphakic lenses, which help teach the brain and eyes to see and focus,” Dr Smith said.
These glasses have since assisted Teddy in every facet of his daily life, from getting around through to reading independently, enabling him to navigate life more smoothly and find fulfilment in the everyday.
Congenital cataracts in both eyes are frequently associated with a genetic cause, so while Teddy was undergoing treatment, his genetics were also being tested to determine if there was an underlying cause for his eye conditions.
Soon after his first birthday, Teddy was diagnosed with Nance-Horan syndrome (NHS), an extremely rare genetic condition that causes eye abnormalities, physical abnormalities and/or intellectual disability. For Teddy, it affected all three.
Since receiving this diagnosis, Teddy has been receiving ongoing support from the Eye Clinic at CHW for his visual development, has regular dental reviews, receives care from a community paediatrician, and attends occupational and speech therapy weekly to support his development.
Teddy’s mum, Angela, said the ongoing support of the Eye Clinic and the therapeutic support Teddy receives have made a big difference to his quality of life in recent years.
“While the journey has not always been a straightforward one, the care provided to Teddy by Dr Smith, Lindley Leonard, his orthoptist, and the whole ophthalmology team has empowered our family through ongoing education and support in understanding Teddy’s eye condition, and most importantly has helped Teddy to lead a fulfilling life while navigating his complex eye condition,” said Angela.
“Occupational and speech therapy have also been transformative. As his speech has improved, he’s been able to verbalise how he feels, which has significantly improved his emotional regulation.”
Now six years old, Teddy has started kindergarten and is thriving.
“Teddy is a funny, energetic, and inquisitive boy who loves the outdoors, playing sports and exploring the world around him. He plays soccer on the weekends and doesn’t let his eye condition slow him down in any way,” Angela said.
“Teddy attends a mainstream school and navigates the school environment well, with classroom adjustments made to support his learning, such as facing away from windows to avoid glare, his teacher writing on the whiteboard in black pen, and sitting at the front of the classroom.”
For Dr Smith, these are the moments that make his career worthwhile.
“It is a privilege to provide care to children like Teddy and see that with the right supports in place, they can navigate low vision and prosper at school and in life,” Dr Smith said.
“As Teddy continues to grow and his visual development is monitored, we will learn more about his vision, but at present, his eyesight has been progressing well and there are no concerns about cataract regrowth.”
Dr Smith first started his career as a fellow over 20 years ago. Now, with the support of Sydney Children’s Hospitals Foundation, a new fellowship will give another ophthalmologist the opportunity to follow in Dr Smith’s footsteps and help make a difference for kids like Teddy.