Mother Notices Her Newborn Won’t Open Her Eyes — Then Doctors Reveal an Exceptionally Rare Diagnosis

When Taylor and Robert Ice welcomed their daughter Wrenley on November 6, 2023, they believed they were beginning an ordinary new chapter as first-time parents.

Throughout Taylor’s pregnancy, medical appointments and prenatal testing had given the couple little reason to expect a serious congenital condition.

But shortly after Wrenley was born, her mother noticed something unusual: her baby girl was not opening her eyes.

What initially seemed like a small concern soon led to a diagnosis that would change the family’s understanding of their daughter’s future.

A Discovery Nobody Had Expected

After Wrenley’s birth, doctors examined her and discovered that she had been born without either eyeball.

Her eyelids were fused, and further evaluation revealed that she had no optic nerves.

Her parents were transferred with her to a children’s hospital in St. Louis, where they spent nine days searching for answers.

For Taylor and Robert, the news was overwhelming. They had spent months imagining their baby’s first experiences, never expecting that she would be born completely blind.

A Genetic Disorder With Very Few Reported Cases

Specialists eventually identified a disorder involving the PRR12 gene.

According to geneticist Dr. Nate Jensen, fewer than 30 cases of the disorder had been described worldwide at the time of the family’s February 2024 interview.

The condition can affect eye development in different ways. Some children may have unusually small eyes, while others can be born without one or both eyes.

In Wrenley’s case, both eyes were completely absent.

Doctors also discovered that she did not produce cortisol, a hormone involved in the body’s response to stress, adding another important aspect to her medical care.

Learning to Experience the World Differently

As the family began adjusting to Wrenley’s diagnosis, Taylor and Robert started thinking about how their daughter would experience the world around her.

Without vision, Wrenley would depend on other senses, including touch, hearing and smell, as she grew.

Her parents began placing clothing carrying their familiar scent near her so she could recognize their presence.

Rather than defining their daughter by what she could not see, they focused on learning how to support her development and celebrate her milestones.

Surgery Offers an Important Step Forward

Wrenley’s fused eyelids created another challenge: the area where her eyes would normally have developed needed room to grow with her face.

She underwent surgery to open her eyelids and prepare the area for medical spacers.

In May 2024, KFVS12 reported that the procedure had been successful.

Her mother explained that foam spacers would be replaced periodically to gradually expand the eye socket area and support normal facial development.

The operation did not restore Wrenley’s sight. Instead, it was an important reconstructive step that could eventually allow her to receive ocular prosthetics.

A Family Finds Support Beyond Its Hometown

After Wrenley’s story was shared by local television station KFVS12, messages of encouragement began arriving from people around the world.

Other families raising children with similar medical challenges contacted Taylor, helping her feel less alone.

Community donations also helped the family manage medical expenses and travel for specialist appointments.

By May 2024, their fundraising total had exceeded $31,000, according to KFVS12.

Wrenley was also expected to participate in medical research aimed at improving understanding of the exceptionally rare PRR12-related disorder.

Her story is not one of restored eyesight, but of a family finding new ways to support their daughter and a medical team working to give her the best possible developmental care.

Sources: KFVS12 — Poplar Bluff Baby Born With Rare Genetic Disorder (February 2024); Surgery Successful for Poplar Bluff Baby Born With Rare Genetic Disorder (May 14, 2024).