Gut Feelings Matter: How Parent Instinct and Intuition Detect Childhood Eye Cancer Early

Monday July 8, 2024

Strong parent instinct and intuition often lead to a child’s eye cancer diagnosis.  Rb Survivor and WE C Hope CEO, Abby White explores what they are and how they differ, why they are so important for retinoblastoma early detection, why primary care providers should take them seriously, and how they impacted the diagnosis journey of four children.

Close-up image of a young African child wearing a cartoon pattern t-shirt, looking directly at the camera. The child's left eye has a noticeable white glow. Over the softly focused background, white text reads What if their eye is telling you something? Below a horizontal golden line is the gold KNOW THE GLOW® logo and the text PREVENT CHILDHOOD BLINDNESS. In the bottom right corner are the Kenyan flag and crests of the government and Kenyatta National Hospital, Nairobi.

Credit: KnowTheGlow

What Are Instinct and Intuition?

Instinct and intuition both guide our behaviour, but they operate in different ways.  Instinct is a biological response hardwired in all animals and humans to ensure survival.  For example, a baby’s reflex to grasp a finger, or the fight-flight-or-freeze response to danger.

Instinct opens the door to intuition, a subconscious process of understanding or knowing something without relying on deliberate thought or logical reasoning.  This is often described as a “gut feeling” or a “sixth sense”.  Because the two are so closely linked, the term “gut instinct” is sometimes also incorrectly used.

While instinct is universal and unlearned, intuition is shaped by our experiences, knowledge, and emotional state, and we can develop intuition with practice.  Intuition helps us make decisions quickly, especially in complex situations where immediate judgment is key.

This little voice within prompts parents, particularly mothers, to notice and question subtle changes in their child, often long before others.

Intuition is different from fear, which is a reaction to perceived danger or threat and often stems from anxiety.  While fear can be loud, overwhelming, and paralyzing, intuition is more of a gentle nudge, encouraging a proactive, focused response without the heightened emotions of fear.

Recognizing intuition involves tuning your focus inward to those quiet, persistent thoughts or feelings that something isn’t quite right.  We can trust our gut by paying attention to these feelings as we observe any changes in ourselves or our children – to their behaviour, health, and of course the appearance of their eyes.

Why Are Parent Instinct and Intuition Important?

When parents notice a slight turn in their child’s eye, or a fleeting white glow in the pupil, and feel uneasy thinking about it, that’s instinct and gut intuition at work.  It’s important to act on these feelings by seeking medical advice, even if the concern seems minor.

Parents following their instinct and intuition becomes crucial for the early detection of many children with cancer

The most common early signs of retinoblastoma, leukocoria (a white glow in the pupil) and strabismus (a turned eye), are most often first noticed by parents.  Because these signs can be fleeting, or only visible under certain conditions, a parent’s gut feeling that something is wrong may be the earliest prompt to seek an eye exam.

Early diagnosis is vital to save a child’s life, and significantly improves the opportunities to preserve their vision.  When retinoblastoma is caught early, the tumours are usually smaller and more localized, requiring less invasive treatment.  Trusting and acting on gut feelings can lead to an early diagnosis, allowing for timely care and the best outcomes possible.

Why Should Primary Care Providers Take Parent Intuition Seriously?

Primary care providers form the frontline in the early detection, referral, and diagnosis of retinoblastoma.  When a parent expresses concern about their child’s eye, even if the signs are not immediately apparent during a consultation, it’s crucial the healthcare provider listens attentively and considers a specialist referral.

As parents are often the first to notice subtle changes in their child, their instincts can be a key diagnostic tool.  Dismissing these concerns may lead to delayed diagnosis and treatment, resulting in more advanced disease and poorer outcomes; potentially even loss of both eyes or the child’s death.

Healthcare professionals should validate parent concerns, perform a thorough fundal (red) reflex eye exam, and always refer for a specialist eye exam when a parent requests this or continues to express concern.  This collaborative approach ensures potential retinoblastoma is identified and treated as early as possible.  Ultimately this saves more children’s lives and vision, and helps children and families thrive.

In the following video, can you identify which findings indicate the child needs a specialist referral?  Answers are shown after each image is presented – test begins at 2:00.

These four family stories illustrate why following your instinct and asking questions are so vital, the importance of prompt action, and the potentially devastating consequences of ignoring parent concerns.

A Wondering Gaze, A White Glow…Why?

Brady’s Story – USA

During Brady’s first weeks of life in 2005, his mum, Lori, repeatedly raised concerns that he was looking up frequently, unable to focus and had a “lazy” left eye.  The paediatrician told her not to worry; infants typically don’t focus until 4 months old.  The answers didn’t feel right to Lori; she continued taking Brady to the doctor, requesting an eye exam.

About two weeks after Brady’s two month well check, Lori noticed his pupils appeared white in certain lighting.  Looking back through photographs, she found the glow was clearly visible before 14 days old.

The paediatrician finally referred Brady to a paediatric ophthalmologist when he was almost three months old.  He was diagnosed advanced cancer in both eyes.  And so began the intense battle to save Brady’s life, and some precious sight.

Lori had asked about the appearance of Brady’s eyes the day he was born.  A nagging unease drove her to continue asking for an eye exam referral, even though doctors repeatedly told her what she saw was normal for a growing baby.  She says “Always ask questions, never give up and always have faith.  When you are faced with life-changing decisions for your children, you may only have one chance.”

Read Brady’s story at WE C Hope

Brady at 14 days, both eyes showing a white glow and slight squint.

14 days old

Brady at 19 days. His left eye shows a white glow and a slight squint.

19 days old

Brady at 40 days. His left eye shows a white glow and squint, while his right eye has no red reflex.

40 days old.

Brady at 88 days old, both eyes showing a pronounced white glow.

88 days old – the day before diagnosis.

Strange Feeling and a Photographic Fact

Noa’s Story – Spain

Noa was a very calm, agile baby, and her parents never suspected any problems with her vision.  When she was about one year old, her mother began to notice a “weird” glow in her right eye, mainly when Noa looked upwards to her mother standing directly above.

After about six weeks with an “odd feeling” about the glow, Noa’s mum finally saw it clearly in the dim light of a restaurant during a family night out.  But no one else saw it.  She asked the paediatrician, who examined Noa’s eyes with an ophthalmoscope and saw nothing.  She arranged a non-urgent ophthalmology appointment that could take up-to 6 months to come through.

The uncomfortable feeling began nudging an old memory forward.  Noa’s mum remembered reading something about the importance of taking a flash photo of children.  Though she couldn’t recall the details, she knew in her gut this core fact was vital for Noa’s welfare.  Her husband ultimately took the photo that captured the glow.

Noa’s mum returned to the paediatrician with the photo.  This time, Noa was urgently referred to the local university hospital, and on to a specialist ophthalmology team in Madrid the following week.  There, she was diagnosed with advanced retinoblastoma.

Noa is a lively thriving child today because of her mother’s instinct and persistence.  Her life was already in danger at diagnosis.  If her family had waited for the routine ophthalmology referral, up-to six months later, her outcome could have been very different.

Read Noa’s story at KnowTheGlow

A close-up photo of a toddler with curly brown hair and large brown eyes, looking up with a slightly open mouth and a questioning expression. Her right eye has a slightly lighter iris and a bright white pupil glow. She is wearing a grey shirt with a black scarf and a small red bow in her hair.
A young girl smiling broadly, holding a certificate and medal. She is wearing a chartreuse running top with a map-like pattern, black leggings, and her dark hair is styled straight and long. She stands in front of a blue wall. Her certificate is for participation in the Copa Prebenjamín, a youth sports league, during the 2022-2023 season, with Club Esportiu Cide.

Desperate Struggle for a Second Opinion

Connor’s Story – Canada

Connor’s family lives in a small rural farming community in Saskatchewan, Canada.  When he was four weeks old, his parents, Peggy and Kevin, began noticing a strange reflection in his left pupil that gradually became more obvious.  Peggy mentioned it at both his four and six week well-baby check-ups, but the doctor said she could see nothing to worry about.

Peggy remembers June 1, 2000, several days after Connor’s six week check-up, “I looked into my precious son’s eyes, and what I saw scared me to death.  In the dimly lit room, his pupils were fully dilated.  His left pupil appeared almost hollow.  We could see all the blood vessels at the back of the eye.  It was eerie”.

Having just examined Connor, the family doctor found no reason to book another appointment.  So Peggy turned to her own optometrist, located in Saskatoon, 3.5 hours away.  Attempting not to panic the family, he recommended an urgent eye exam.

Back at the family doctor’s office, over an hour from home, the paediatrician again dismissed Peggy’s concerns.  She recalls, “I will forever feel guilty about not pushing harder at this point.  There is no excuse, except that I so wanted to believe nothing was wrong that I accepted the doctor’s opinion.  Deep down, I knew something was wrong, but not in my wildest dreams did I imagine cancer”.

The following week, in Saskatoon on business, Peggy asked her optometrist to examine Connor.  Very concerned, he tried hard to secure an urgent ophthalmology referral, without success.

Arriving home on Friday June 9, Connor was very unsettled, and vomited through the night.  On Saturday morning, Peggy took him to the community hospital, worried about dehydration.  She asked again for an eye exam, and finally the doctor secured an urgent ophthalmology appointment first thing Monday.  That would never take place.

On Sunday morning, June 11, Peggy woke to find Connor’s eye had swollen to the size of a golf ball.  The local hospital quickly referred him to an emergency eye clinic in Regina, two hours away.  There, a “torturous” eye exam and CT scan confirmed that Connor’s eye was entirely filled by retinoblastoma.

Connor and his parents flew immediately to Toronto, where doctors at the Hospital for Sick Children were very concerned the cancer had already spread outside his eye.  An MRI indicated the cancer had penetrated his optic nerve:

At barely two months old, Connor was fighting for his life.  Doctors had repeatedly dismissed his mother’s instinct and questions, wasting precious opportunities to diagnose his cancer sooner.

Today, Connor is cancer-free and thriving.  The course of his cancer took an unexpected turn shortly after his diagnosis; he is a very lucky young man indeed.

Read Connor’s story at WE C Hope

Connor as a young baby.
Connor, a healthy young boy beyond treatment.

Crawling and Coma – Surprising Signs of Eye Cancer

Macy’s Story – USA

Macy was a very happy, calm baby who rarely cried, slept and ate well, and was full of smiles.  However, her mom, Jennifer, was concerned she didn’t attempt to crawl like other babies of her age.  The paediatrician told her not to worry as babies crawl at different stages.

After a blissful first year, Jennifer resumed her medical studies.  Macy developed an ear infection just a few days after starting day-care.  Soon after being put to bed for the evening, she awoke screaming, clearly in great pain.  Jennifer tried nursing, comfort holds, and medication, but nothing calmed her.  Finally, around 4 am, Macy fell into a deep sleep.

In the morning, Macy was very drowsy as she nursed.  Jennifer assumed the rough night had wiped her out.  Back at home later that day, they napped together, both still exhausted.

Jennifer was shocked to wake from this “nap” at 3 am, terrified to find Macy still asleep.  She knew instantly that something was seriously wrong, and took Macy straight to her paediatrician as soon as the office opened.

The doctor couldn’t rouse Macy, and she barely flinched during a blood draw.  Her paediatrician was very concerned about her consciousness and one of her eyes.  She was sent to the ER at Texas Children’s Hospital for altered mental status.

There, Macy had a full exam and multiple tests, including a CT.  Several police officers and social workers also questioned Jennifer and her husband.  Terrified for their daughter, and advocating for her care, they also faced suspicions of child abuse.

Finally the CT results revealed something Jennifer never imagined.  Macy had a very large tumour blocking all blood flow to her right eye, putting extreme pressure on her brain.  The pressure was causing her to fall into a semi- comatose state.

The police and social workers immediately apologized and closed their abuse investigation.  Macy was admitted to Texas Children’s Hospital, where she remained in a coma for six days.

Macy did not exhibit the typical early signs of retinoblastoma – no white pupil glow, no turned eye.  But Jennifer did recognize that she was not crawling like other children her age.  A child’s reluctance to crawl or walk can be a subtle sign of vision impairment.  The paediatrician dismissed Jennifer’s concerns – until Macy became unresponsive, by which time her life was in serious danger.

Jennifer wants to encourage parents to be aware of changes in children’s behaviour.  She hopes by sharing Macy’s story, others will heed the small signs that something is not right and advocate for their child.  She knows just how lucky they are to have caught Macy’s cancer in time.

Read Macy’s story at KnowTheGlow

A toddler sits in a hospital room, wearing a green hospital gown with orange and brown butterfly prints. She has curly brown hair and her right eye is significantly swollen and is surrounded by medical equipment.
A smiling young girl with curly brown hair sits on a wooden box, her hands clasped in front of her. She is wearing pink glasses and a blue sweatshirt with a Minnie Mouse pattern. The background features lush greenery and a rustic brick and wooden fence. The year "2024" is displayed in the top right corner.

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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