A Glint or a Squint Could Be Your Hint: Knowledge is Key to Retinoblastoma Early Diagnosis
Monday April 29, 2024
Critical clues to a child’s eye cancer hide in plain sight. Parent and physician knowledge, and ability to spot these silent signs are vital to early detection, swift referral, and prompt diagnosis. Meet five children from around the world whose parents’ curiosity, nagging concern, and action were pivotal to their diagnosis and life-saving, sight-saving care.
Credit: Know The Glow
Spot the Silent Signs
Critical clues to a child’s eye cancer hide in plain sight. A turned eye or white reflection in the pupil of the affected eye are the most common early signs of retinoblastoma. They can also indicate other potentially blinding eye conditions.
Observe your child’s eyes carefully and check photos for healthy fundal (red-eye) reflex. Seek an eye exam if you have any concerns about the appearance of your child’s eyes, or their vision.
Awareness of these easy-to-see early signs among the public and healthcare professionals is life-saving, sight-saving power. Below, we share five stories from families around the world whose quest for knowledge and explanation was crucial to their child’s diagnosis. You can read each story in full on our website or at Know The Glow by following the link provided.
A Family Dinner, Dr. Google, and a Counting Game
Logan’s Story – USA
Logan is a curious pre-schooler who loves cats, being outdoors, and learning about the weather. His parents never suspected that one fleeting moment during a family dinner would help save his life.
On a routine evening in early 2022, as Brittany sat opposite her son in the dimly-lit dining room, she noticed a momentary flash in her son’s left eye. She recalls “It almost looked like a reflection from a CD when the light hits it just right. I was not overly alarmed as it was so quick, it was easy to dismiss.”
A few weeks later, Logan’s left eye began to drift, and Brittany felt sure the glow she had seen was connected. So she asked Dr. Google for answers. She was now alarmed to learn about retinoblastoma and other potentially blinding conditions that can cause a glowing, misaligned eye,
Logan’s parents made a game of testing his finger counting vision. When his drifting left eye was covered, Logan counted perfectly. When his right eye was covered, he said “I can’t see, that’s my bad eye”.
The very next day, Brittany began calling doctors for help. Thanks to her advocacy, Logan was quickly diagnosed with Group E (advanced) unilateral retinoblastoma.
Brittany’s curiosity and quick action saved his life – and sharing his story has led to the diagnosis of at least one more child.
Awareness, Action and Care Saves Life and Sight
Liam’s Story – Kenya
Liam lives in the fertile tea-growing region of central Kenya. He has a broad smile today, enjoying the learning and play of school, where he is thriving.
When Liam was eight months old, his left eye began to swell. Concerned, his mother, Faith, took him to the county’s referral hospital. After an exam at the eye clinic, Liam was prescribed eye drops that cleared up the swelling within days.
Reassured by the drops’ effectiveness, Faith dismissed the swelling as a normal infant eye infection. Still, she paid close attention to Liam’s eyes.
In early February 2020, Faith noticed a white glow in her son’s left eye. The strange reflection appeared repeatedly in the dim evening light, and in photographs. Concerned, she returned to Longisa referral hospital eye clinic. An eye exam and ultrasound revealed Liam had cancer in both eyes, and within one week, he was receiving specialist Rb care at Nairobi’s Kenyatta National Hospital.
Liam’s left eye was immediately removed to stop the cancer spreading. Though he has endured 13 rounds of chemotherapy, countless laser and cryotherapy treatments, and relapse, the expert care and constant follow up EUAs have successfully treated Liam’s cancer. He is thriving today, with no active tumour, and good vision in his right eye.
Faith’s close observation of her son’s eyes, curiosity about the glow, and swift action to find answers saved his life and precious sight.
Pooh’s Story – Vietnam
One late afternoon, Tanya sat beside a window, holding her three-month-old daughter in her arms. As she gazed at baby Pooh’s beautiful face, she noticed a glimmer in one eye.
Tanya called over her mother, a nurse, to have a look. She also saw the glow, but assumed it was a normal reflection of sunlight dancing across her granddaughter’s face. Tanya felt uneasy – she had never seen anything like this in the eyes of her two older children.
Over time, the glow continued to appear, and Pooh’s eyes did not focus or track together. At a scheduled vaccination appointment, Tanya asked the doctor for advice. He referred Pooh to an ophthalmologist, and later that same day, an ultrasound revealed cancer in both her eyes.
The clinic’s doctors, who were not experienced in treating retinoblastoma, advised that both eyes should be removed. Tanya was devastated, and struggled with the lack of information to help guide her decisions for Pooh.
Researching her options in Vietnam, Tanya found one of just two retinoblastoma specialists in the country. A prompt EUA found that both Pooh’s eyes had potential to be saved, and treatment began immediately.
Tanya craved connection with others who understand Rb, finding support and knowledge through the global network of Rb Moms. The Facebook group became a lifeline, giving her hope for the future, and confidence to care for her baby.
Pooh’s right eye responded well to chemotherapy and laser, but after several relapses and persistent seeds, her left eye was removed to protect her life. Today, she is a very happy and active little girl, cancer free and full of childhood joy.
Mother’s instinct and a desire to understand compelled Tanya to ask life- and sight-saving questions. She now shares support and raises awareness so other families can have hope when retinoblastoma strikes.
Children Rely on Parent Advocates
Aidan’s Story – Canada
When Aidan was about 3 months old, his mother, Melody, began to notice changes in both his eyes. They could no longer track together – his left eye turned in, while his right eye would momentarily quiver. She raised her concern with the doctor, who said Aidan may have a lazy eye, which could be corrected when he was older.
Over time, Melody’s previously contented baby grew more distant and agitated. He would stare at lights and rip tissue paper into tiny pieces. He never touched Melody’s face, or reached for objects like toys, and he never laughed.
By 6 months old, Melody was convinced Aidan had autism. Discussing this with her uncle one day, she was stunned by his response: “I think he is blind”. She had never considered this possibility, but it would explain everything.
Melody took Aidan to see an ophthalmologist. Though he examined Aidan’s eyes, he did not dilate the pupils to clearly view the retinas. He diagnosed a lazy eye, and dismissively said it could be corrected when he was older.
Melody felt sure Aidan needed a more thorough eye exam. She had to wait two months for that second opinion. During that time, Aidan never tried to explore, play, or make eye contact.
The second ophthalmologist dilated Aidan’s pupils, and immediately recognised the cancer in both of Aidan’s eyes. The following morning, Aidan had his first EUA, the one that completely changed his family’s life. At 10 months old, he was diagnosed with bilateral retinoblastoma
Within 24 hours, Melody and Aidan had flown across Canada to Toronto’s Hospital for Sick Children. There, she learned more about retinoblastoma the long treatment journey ahead. She was overwhelmed by the possibility that Aidan might lose both eyes due to the cancer’s size, but saving his life would always be the priority.
And so began four years of cross-country travel for intensive treatments, brief periods of stability, and many relapses or new tumours. He received 14 rounds of chemotherapy, countless cryotherapy and laser treatments, and a radiation plaque in both eyes. Ultimately, after a very long, hard battle, Aidan’s left eye was saved with a little precious vision.
Melody knew something was desperately wrong with her baby boy. Even after hearing the same diagnosis of lazy eye from her family doctor and an ophthalmologist, intuition pushed her to seek another exam. Her determination to find answers saved Aidan’s life, and a small amount of sight.
She had no camera two decades ago, when Aidan was a baby. In her few photos, leukocoria is visible, but as it was present in both eyes, it didn’t stand out as unusual. She urges all parents to take many photos and check them carefully for white pupils, and to follow your instincts.
Friends Can Be Advocates Too!
Rowan’s Story – USA
When Megan was expecting her first baby, she joined an online forum for moms-to-be with an August 2007 due date. Global friendships formed as the women shared stories and photos, awaited and celebrated their new babies.
Rowan was not a contented baby. She battled through colic, acid reflux, infant food allergies, ear infections, and more, and cried frequently. Working and studying full time while caring for their baby, her parents were exhausted.
When Rowan was 11 months old, her father’s new job relocated the family to Florida. Her allergies were resolved and she’d almost outgrown the acid reflux, but she was still not happy. Though not yet sleeping through the night, her days at least were much better.
As the family unpacked their new home, Megan began to notice Rowan’s left eye looked greener than her blue right eye. Though her husband couldn’t see the difference and thought she was fretting about nothing, the change nagged at Megan. She asked the moms’ forum if anyone had seen something similar in their child.
One mom, Madeline, suggested Megan post a photo. So she found her camera and photographed Rowan. She used the flash as the new house had less natural light, being shaded from the hot southern sun.
Megan posted a series of photos, and almost immediately, received a private message. Madeline had noticed a white glow in Rowan’s left eye, and knew from media stories this could be a sign of something serious. Her friendly message encouraged Megan not to panic, while advising her to seek an eye exam.
Madelaine linked to a website with information about retinoblastoma. As Megan looked through it, she knew this was the cause of Rowan’s changing eye and distress. She immediately began looking for a suitable doctor, thankful for the temporary insurance policy she had purchased before the family’s move.
Later that day, Rowan’s parents took her to a paediatrician, though her father remained sceptical. In his darkened room, the paediatrician carefully examined Rowan’s eyes with an ophthalmoscope. She saw something of concern, but couldn’t say what, and referred Rowan to an ophthalmologist for an urgent eye exam.
The family drove directly from the paediatrician to the ophthalmologist. When they arrived an hour later, the office was already closed for the weekend, but the specialist was there, waiting to see Rowan.
After a long day, multiple exams and stinging eye drops, Rowan was very distressed, and her parents grew more alarmed and distraught with each step. The doctor dilated Rowan’s eyes and patiently worked with her through the eye exam. Unable to see her optic nerve, and suspecting retinoblastoma, he ordered MRI and CT scans to be done that day under general anesthesia.
During that wait at the children’s hospital, Rowan took her first unassisted steps, unaware of the long journey ahead of her.
The ophthalmologist examined Rowan’s eye more thoroughly while she was under anaesthesia, this time almost certain she had cancer in one eye. Although he could now see her optic nerve, the large mass was very close to it. He referred Rowan to a retinoblastoma specialist in Miami for evaluation first thing Monday morning.
Rowan’s heartbroken parents returned home with her to wait and prepare through the anxious weekend. Megan updated Madelaine, unable to fully express her gratitude for her friend in England. Though she had known something was wrong with Rowan, she couldn’t identify a plausible explanation, and never imagined her daughter might have cancer.
Three days later, Rowan had her first appointment in Miami, and an EUA the following day confirmed her diagnosis, retinoblastoma filled her left eye. And so she began nearly a year of treatment, aiming to save her eye and her life.
Megan’s instinct, a photo, and one aware friend 4,000 miles away saved Rowan’s life. Maddie and Megan chose to share their very unusual story to help educate about the early signs of retinoblastoma. The media odyssey that followed has led parents around the world to their child’s life-saving diagnosis.
About the Author
Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.
Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries. After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.
Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.
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