Baby born without eyes due to rare genetic disorder

Robert and Taylor Ice were ecstatic when they found out they were expecting after struggling with infertility — and were told the unborn baby was healthy.

But when Wrenley Ice was born via C-section on Nov. 23 at 6 pounds, 10 ounces, they knew something was not right.

“I did notice she wasn’t opening her eyes, so I had asked the nurse,” Taylor told KFVS, initially assuming that it was just that babies “don’t open their eyes right away” because they’re used to dark in the womb.

However, the pediatrician who examined their newborn soon delivered shocking news.

“He just like stops with his examination and looks up at us and says, ‘Your daughter doesn’t have any eyes,’” the new mom recalled.

“I just looked at him and said, ‘What do you mean, they’re small?’ He goes, ‘No, they aren’t there,’” she said.

“And I just burst into tears because I just couldn’t fully process what that meant at the time.”

The Poplar Bluff couple went more than 150 miles to the Children’s Hospital in St. Louis in search of answers.

“One diagnosis led to another diagnosis,” the mom said of her baby born without eye tissue and with the lids also sealed.

Finally, Dr. Nate Jensen, a geneticist, discovered a disorder called haploinsufficiency of ​PRR12, a gene, which causes a spectrum of neurodevelopmental, eye and multisystem abnormalities.

“This is an incredibly rare condition — there’s less than 30 cases described in the world,” Jensen told the outlet.

“In PRR-12 disorder there’s a spectrum of how patients are affected by it. Some patients with the same gene change have one eye affected and it might be totally absent like in Wrenley’s case,” he said.

“Or it might just be smaller, and in this case, both of the eyes are affected and both are completely absent,” the expert said, adding that the condition also could affect Wrenley developmentally and intellectualy.

“There’s nothing Wrenley’s mother or father did to cause this, there’s nothing either could’ve done to prevent it. It’s totally random,” Jensen explained.

Mom Taylor, meanwhile, said: “I mean we had a better chance of winning the Powerball.”

But the parents said that as far as they’re concerned, they did win the lottery with their baby.

“It’s kind of like the whole world in your hands,” Robert said as he gazed lovingly at his long-awaited baby.

“In the long run, I feel it was us who was chosen to help her out along the way and that we would learn from her as well.”

Taylor also noted that Wrenley knows no different.

“Fort her, this is just her normal,” she said.

The family said on GoFundMe that Wrenley will need 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,” they said. “We are hopeful that with resources, aides, support, and love that she will thrive and have a long and happy life.”