Myla’s Glow Story

Diagnosis: Unilateral persistent fetal vasculature (PFV)

Megan Webber had the chance to connect with Haley Hite, the amazing mother of two daughters, Maci and Myla. Haley shared the incredible journey in her home state of Ohio that led to Myla’s diagnosis. Megan marveled at how perfectly the stars aligned to help Myla find her way to care so quickly. This her story:

“I’m not sure if you noticed, but Myla’s right pupil looks cloudy.”

Cue the panic.

I hadn’t noticed. My daughter’s daycare provider mentioned it to me during pick-up when Myla was 3 months old. I knew a cloudy pupil was a big deal in babies. I learned through my friend Mandi’s previous experience with her own child.

Before I became a mom, Mandi’s son Cannon had “the Glow” in his eye and was first misdiagnosed with retinoblastoma. After numerous appointments and sedated procedures, Cannon’s diagnosis was corrected to Norrie disease. I watched my friend go through the heart-wrenching experience of learning her son would be blind. She taught me to look for “the Glow” in flash photography, and this knowledge stuck with me for years to come.

Jump forward to 2020 when I had my own children. After noticing Myla’s cloudy pupil, I took her home, turned on my camera’s flash, and started snapping away. Sure enough, there was a noticeable white spot in her right eye.

I immediately called Myla’s pediatrician to schedule an appointment. It was difficult to sleep that night. I found myself reading stories on I became overwhelmed by all the possibilities of what Myla might have.

At her pediatrician appointment the next day, the doctor didn’t give me any answers. Myla failed her red reflex test, which concerned him. He echoed my urgency — she needed to see a pediatric ophthalmologist right away.

“Send her to Nationwide Children’s Hospital in Columbus,” I said.

That’s where my friend’s son had gone, and even though it was a 2-hour trek from home, I knew Myla would be in good hands there. 

Within days, I was holding Myla in my arms as Nationwide’s Hilliary Inger, MD, dilated then shined a light into her right eye. Dr. Inger couldn’t get a good look at the back of her eye, so we scheduled an ultrasound for a few days later.

My fears lingered. What if it’s a tumor? What if my 3-month-old baby has cancer?

I begged my loved ones to pray for the best outcome. Whatever Dr. Inger would find, I prayed that it wouldn’t threaten my little girl’s life.

On ultrasound day, my anxiety was through the roof. I waited in an adjacent room as the team conducted the ultrasound. I could hear my baby crying, and I cried, too. Finally, Dr. Inger sat down next to me and relieved my biggest fear: It wasn’t retinoblastoma. It was unilateral persistent fetal vasculature (PFV), also called persistent hyperplastic primary vitreous (PHPV). Myla also had microphthalmos, which means one of her eyes is smaller than the other.

Dr. Inger drew a picture for me and explained that while growing in the womb, all babies have blood vessels (kind of like a stalk) that connect the pupil to the optic nerve. Before birth, those blood vessels are supposed to disconnect. In Myla’s case, they remained connected in her right eye, and the pressure from that connection caused a cataract (the cloudy pupil). Most PFV cases are congenital and sporadic — this happened randomly in the womb. 

Dr. Inger recommended emergency surgery to remove the cloudy lens from her eye and disconnect the stalk. Every day that passed meant lost vision, so we scheduled it for later that week.

Dr. Inger also told me that withdrawing the cataract meant removing the natural focusing power of Myla’s eye. After healing, Myla would need to wear a contact lens to help her right eye focus. Due to her young age, Myla was not a candidate for an intraocular lens implant. I also learned that we’d have to patch Myla’s normal eye for 5 hours each day until at least age 7. This would help strengthen the vision in her weaker eye and correct/prevent amblyopia (lazy eye).

Because all of this happened during the pandemic, it was just me and Myla on surgery day. I felt nervous and alone. I remember rocking her in my arms as I waited for the nurse to take her back to surgery.

“Please take good care of my baby girl,” I told them.

Surgery took about an hour and went well. Dr. Inger performed a lensectomy and vitrectomy to remove the cataract and disconnect the stalk. Now it was time to heal, learn how to help my infant daughter wear a contact lens, and patch.

Because we live in Ohio, we’re blessed with free eye patches from the Ohio Amblyope Registry. As part of the Save Our Sight program, it’s the first and only statewide program in the United States designed to serve the needs of children with amblyopia. 

Today, Myla is a thriving 20-month old who is walking, talking, and strengthening her eyesight every day. Her PFV eye has 20/80 vision, and we’re hoping it will continue to improve. When she turns 2, she’ll likely need to wear bifocals AND a contact lens. This will improve both distance and close-up vision.

Myla sees Dr. Inger for check-ups every 3 months. The main reason for this is because having a lensectomy and PFV puts Myla at increased risk for glaucoma. Myla has also seen a retina specialist at Nationwide who reported that her retina looks great.

Looking back on Myla’s journey so far, I’m thankful the stars aligned like they did. I’m grateful for my friend, who taught me the urgency of seeing “the Glow.” I’m thankful for Myla’s daycare provider who first noticed the suspicious, cloudy pupil. And I’m indebted to Dr. Inger, who performed a flawless surgery and continues to take excellent care of my daughter’s vision.

Parents, trust your instincts. If something doesn’t seem right with your child’s eyes, get answers. “Knowing the Glow” and taking immediate action for an early diagnosis truly saved my daughter’s eyesight. 

And don’t be afraid to reach out to other parents for support. If your little one is diagnosed with PFV, join the private Facebook group People with Persistent Hyperplastic Primary Vitreous (PHPV) Unite. We’d love to have you.