US parents stunned after baby born without eyes due to rare condition

Robert, Taylor and Wrenley Ice.
Robert, Taylor and Wrenley Ice have a long road ahead of them. Photo credit: KFVS-12 / GoFundMe

A couple in Missouri, US were overjoyed when they fell pregnant last year after a long fertility battle, but after the birth, the new parents realised something wasn't quite right.  

Their newborn daughter was born without eyes - a rare congenital condition that can be associated with other birth defects.

Speaking candidly in a recent interview with Missouri news station KFVS 12, Robert and Taylor Ice revealed that throughout the pregnancy, they were told their daughter was perfectly healthy.  

Their baby, named Wrenley, was born via C-section on November 6, 2023, but Taylor noticed she wasn't opening her eyes.   

"I asked the nurse. She told me, 'In the womb it's dark, so they don't normally open their eyes right away'," the mum told KFVS 12.   

"The paediatrician's going over the baby and he just stops with his examination, looks up at us, and says, 'Your daughter doesn't have any eyes'," she recalled.  

"I just looked at him and said, 'Do you mean they're small?' He goes, 'No, they aren't there'. I just burst into tears because I just couldn't fully process what that meant at the time."

Despite having just undergone a caesarean delivery, Taylor and her husband Robert were sent 240 kilometres away to St Louis Children's Hospital, where they spent the next nine days in the neonatal intensive care unit as doctors searched for answers.   

Baby Wrenley.
Baby Wrenley. Photo credit: GoFundMe

The parents were given a number of diagnoses, but remained in limbo for over a week as doctors continued to debate the cause of Wrenley's condition.   

Finally, doctors determined that Wrenley had been born with anophthalmia, a congenital birth defect where a baby is born without one or both of their eyes. 

The couple were told their daughter had not only been born without eye tissue or an optic nerve, but was unable to produce cortisol, a stress hormone. She was also diagnosed with septo-optic dysplasia, a disorder of early brain development. Although its signs and symptoms vary, the condition is traditionally defined by three features: underdevelopment of the optic nerves, abnormal formation of structures along the midline of the brain, and pituitary hypoplasia.

According to the US Centers for Disease Control and Prevention (CDC), there is no treatment available to create a new eye or that will restore complete vision for those affected by anophthalmia. According to some estimates, it affects about one in every 5200 infants born in the US.

"I couldn't believe that something like that happened to us," Taylor said.   

Genetic testing subsequently revealed Wrenley also had haploinsufficiency of the PRR-12 gene, which doctors said had led to her eyes not developing in the womb. As per reports, it's estimated only 30 cases have been documented in the world. 

"This is an incredibly rare condition," Dr Nate Jensen, a geneticist at St Louis Children's Hospital, told KFVS 12.  

"There's a spectrum of how patients are affected by it. Some patients with the same gene change have one eye affected. [The eye] might be totally absent, like in Wrenley's case, or it might just be smaller."  

Dr Jensen added that while research on PRR-12 is extremely limited, it could cause intellectual and developmental delays. He estimates that if Wrenley was to have children, there is a 50 percent chance she could pass on the condition.

"There's nothing Wrenley's mother or father did to cause this," Dr Jensen told the outlet. "There's nothing either could've done to prevent it - it's totally random."

While there is no cure for anophthalmia, doctors can give affected babies prosthetic eyes to help them live a relatively normal life.  

Robert, Taylor and Wrenley Ice.
Robert, Taylor and Wrenley Ice. Photo credit: KFVS-12

The family have since launched a GoFundMe to help cover their medical expenses and travel from their home in Poplar Bluff to the hospital in St Louis. At the time of writing, the page has raised US$16,426 of a $20,000 goal. 

Wrenley will soon undergo surgery to unseal her eyelids and insert spacers, which will help her facial structure develop normally.  

"She will have to have surgery to unfuse her eyelids and put in spacers so her facial structure develops properly. She will eventually get glass eyes once she is older," the family wrote on their GoFundMe.

"We are creating this fundraiser to help with the costs of her treatments as well as gas money for her appointments and for any additional aides she can use, since she will be completely blind with no chance of regaining her vision.

"Wrenley is otherwise happy and healthy, but she is at increased risk of developmental disabilities and delays due to her condition. We are hopeful that with resources, aides, support and love that she will thrive and have a long and happy life."

The couple is now focusing on raising Wrenley as normally as possible. Every night, she sleeps tucked in one of her parent's shirts to get accustomed to their scents.

"It's hard for us to visualise what life would be like if we could not see. If someone took my vision, I'd be devastated. But for her, this is just her normal," Taylor said.