Toddler Aayaan owes his life to flash photography and his observant parents after an unusual white reflection in his eye showed up in a photo. Aayaan’s right eye appeared to have a silver cat like ring surrounding his pupil. Despite a GP initially dismissing the sign, Aayaan’s parents had him examined by an ophthalmologist who discovered that Aayaan had a tumour growing at the back of his eye. He was eventually diagnosed with retinoblastoma, a form of eye cancer that affects children under five.
Specialists later discovered that Aayaan had been blind in the effected eye since birth and that the tumour had been growing in that eye for about eight months. Only two years old, Aayaan underwent lifesaving surgery to have his cancerous eye removed. It was confirmed later through genetic testing that Aayaan had the sporadic form of retinoblastoma which can occur randomly, as opposed to the genetic form that might be passed down from parents and increases the risk of future tumours in other organs.
Associate Professor Mark Daniell, President of the Royal Australian and New Zealand College of Ophthalmologists (RANZCO), says that, while eye cancer is quite rare, retinoblastoma is the most common eye cancer found in children, affecting 1 in 15,000 children worldwide. “Early diagnosis is key to ensuring a child has the best chance at surviving retinoblastoma,” explains A/Prof Daniell, “and so recognising the warning signs, such as a white reflection in a photo, are very important. Thankfully, in Australia and New Zealand there is an excellent 98% survival rate for children who were diagnosed with retinoblastoma.”
Aayaan’s father, Alok, says he is doing well since his surgery. “Aayaan can spot a plane high in the sky very easily. He does need a little more practice catching a ball though as he has difficulty judging speed. We were so lucky that we noticed the white reflection in his photo. I don’t like to think about what could have happened if we hadn’t seen that. We hope that other parents hear about our experience and are more aware of what retinoblastoma is and what signs to look out for.”
Orthoptist, and Retinoblastoma Care Co-ordinator at the Royal Children’s Hospital, Melbourne Sandra Staffieri, says that because retinoblastoma is a rare form of cancer, not many people are aware of the signs to look out for. “If you notice an eye has a white pupil in a photograph” explains Sandra, “this indicates that the flash is reflecting off something inside the eye. Sometimes a white pupil in a photo can be normal, however you want to be very sure that the effect is not caused because of a tumour by having the child examined by an eye care specialist.”
“Another sign often overlooked is a turned eye. Most often a turned eye in young children is not a cause for alarm, however sometimes it can be a sign that a tumour growing in the back of the eye has become so big that it has reduced the child’s ability to use their two eyes together. If you notice a child has a turned eye or a white pupil in a photo it is very important to have the child’s eyes examined by an eye doctor within 48 hours. Early detection is the absolute key to ensuring that a child has the best possible chance of surviving retinoblastoma and retaining their full vision.”
Paediatric Ophthalmologist, Ashwin Mallipatna from the Women’s and Children’s Hospital in Adelaide chaired the first ANZ Retinoblastoma Alliance meeting recently in September. He recommends that “If a person has had retinoblastoma, it is important that they have genetic testing to determine if the cancer is heritable. Finding out the root cause of their retinoblastoma will help determine whether it is possible to develop other cancers, or pass the cancer on to their own children.”
The eye care professionals and oncologists present at the Retinoblastoma Alliance meeting want parents and carers to know that “No child is too young to be examined for retinoblastoma, if there is a sign or problem causing a concern, then an eye care specialist needs to examine the child as soon as possible.”
September 9 2017, group photo on the day of the first ANZ Retinoblastoma Alliance meeting.
For more information or to arrange an interview contact Emma Carr or Josie Faunce at RANZCO on 02 9690 1001 and firstname.lastname@example.org