What's That White Spot in My Kid's Eye? | Jesse Berry, MD
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When most parents snap photos of their kids, they’re focused on capturing the smile or a silly face. But sometimes, a photograph can reveal something far more serious—a strange white reflex in the pupil.
As a pediatric ophthalmologist, I know how alarming this can be. And as a mom, I also know the spiral of worry that happens the moment you spot something unusual in your child’s eyes.
That’s why I was so grateful to sit down with my friend and colleague, Dr. Jesse Berry—an internationally recognized leader in pediatric ocular oncology and director of Ocular Oncology at Children’s Hospital Los Angeles. She has pioneered a groundbreaking liquid biopsy technique that’s helping us diagnose retinoblastoma earlier, personalize treatment, and save children’s eyes—and their lives.
Together, we unpacked what parents need to know about this rare disease.
What is Retinoblastoma?
Retinoblastoma is a rare childhood cancer of the retina, the light-sensitive tissue at the back of the eye. It’s most often diagnosed before the age of five—sometimes even in infancy.
It develops when the RB1 tumor suppressor gene—the “stop sign” that keeps cells from dividing too quickly—doesn’t work properly. Without that brake, cells grow unchecked, forming a tumor.
Some children have just one tumor in one eye. Others may develop multiple tumors in both eyes, especially when the genetic change is present throughout the body.
The White Reflex (Leukocoria): Why It Matters
One of the most common signs of retinoblastoma is leukocoria, or a white reflex that shows up in photos. Instead of the usual “red eye” you’d expect from a flash, you see a white or yellow glow.
But here’s the tricky part: not every white reflex means cancer. Other causes include high glasses prescriptions, pediatric cataracts, retinal detachments, and even benign conditions.
That’s why Dr. Berry and I both emphasize: if you notice a persistent white reflex, your child needs to be seen by an eye care professional who can dilate the eyes and perform a full exam. A quick look with a penlight just isn’t enough.
The Parent’s Gut Instinct
Dr. Berry shared something that resonated deeply with me: most of her patients with retinoblastoma had initially been told by another doctor that their eyes were fine.
That’s why she encourages parents to keep pushing if something feels off. As moms ourselves, we know that instinct is powerful. If you’ve noticed something unusual—whether it’s a white reflex, crossed eyes, or changes in vision—don’t ignore it.
Diagnosis and Treatment
When a child is suspected to have retinoblastoma, time matters.
Here’s what typically happens:
Comprehensive exam under anesthesia: This allows the specialist to get a complete view of the retina without the child moving or being distressed.
Imaging: Ultrasound, OCT, and MRI are used to determine if the tumor is confined to the eye or if there’s any spread.
Genetic testing: This helps determine whether the mutation is inherited or new, which has important implications for siblings and long-term care.
Treatment options include:
Systemic chemotherapy (low-dose, treats both eyes if needed)
Intra-arterial chemotherapy (delivers chemo directly into the eye’s blood supply)
Laser or freezing therapy (to consolidate tumors)
Intravitreal injections (chemo injected into the eye for tumor “seeds”)
Surgery (enucleation): In advanced cases, removing the affected eye may be the safest option to protect the child’s life.
And as heartbreaking as the idea of enucleation can be, modern prosthetics look natural and allow children to thrive. Many families are grateful to know their child is cured of cancer and can move forward with a healthy, full life.
The Good News: Survival Rates Are High
In the United States, survival rates for children with retinoblastoma are 98–99% when the cancer is caught early and confined to the eye.
The bigger challenge is preserving vision. With earlier detection and advanced treatments like liquid biopsy, we are improving not only survival but also the quality of life for these children.
What Parents Can Do
Pay attention to photos and videos. Sometimes videos show the white reflex more clearly than pictures.
Trust your instincts. If something feels wrong, push for a referral to a pediatric ophthalmologist or ocular oncologist.
Remember: not all white reflexes are cancer, but all deserve evaluation.
If you’re concerned, don’t settle for reassurance without a dilated eye exam.
Resources for Families
If you want to learn more or connect with other families, here are a few trusted resources Dr. Berry recommends:
Know the Glow
We See Hope
Children’s Hospital Los Angeles – Ocular Oncology
Final Thoughts
Retinoblastoma is rare—but awareness saves lives. Parents are often the first to notice that something isn’t right. If you’ve ever felt uneasy about what you’re seeing in your child’s eyes, please, don’t ignore it.
From one mom to another: your gut matters. And from one doctor to another: early action changes everything.
Want to Learn More?
This is just the beginning. In upcoming episodes, we’ll explore:
-How screen time and digital habits are shaping our kids’ development
–The connection between vision and overall health
–What you need to know about common eye procedures like LASIK and cataract surgery
–Practical ways to advocate for your child’s visual needs
You can subscribe to my podcast, In Focus, anywhere you listen—or follow along on Instagram for updates and tips.
Watch this episode on Youtube right now!
Thanks for reading—and for doing what you can to protect your child’s vision, one step at a time.
– Dr. Rupa Wong
Pediatric Ophthalmologist | Surgeon | Mom of 3
This episode is brought to you by The Pinnacle Podcast Network! Learn more about Pinnacle at learnatpinnacle.com
