Missouri parents have spoken out after their baby girl was born without eyes due to a rare genetic condition.
As reported by KFVS12, Taylor and Robert Ice were overjoyed when they found out they would be welcoming a baby, after a year of struggling with fertility.
After several checkups at the hospital, including ultrasounds, and genetic testing, Taylor and her husband were told that they had a perfectly healthy baby.
So, on November 6, 2023, Wrenley was finally born at 6 pounds 10 ounces. Taylor recalled how special her delivery was, telling the outlet: "When I heard her, I just burst into tears. I mean hearing her, it was just perfect."
However, things took a sudden turn when the parents realized something was amiss as the mom revealed: "I did notice she wasn’t opening her eyes, so I asked the nurse," as cited by the publication.
The nurse then explained to Taylor and Robert that the reason for this is because "in the womb, it’s dark," so babies "don’t normally open their eyes right away," but, baby Wrenley never opened her eyes.
"The pediatrician’s going over the baby and he just like stops with his examination and looks up at us and says, 'Your daughter doesn’t have any eyes,'" she said, adding that he shared the news "bluntly".
"I just looked at him and said, 'What do you mean they’re small?'" Taylor asked. "He goes, 'No, they aren’t there,' and I just burst into tears because I just couldn’t fully process what that meant at the time."
Though the mother had just given birth via C-section, she and her husband drove that same day to St Louis Children's Hospital, where they spent nine days looking for answers.
Robert opened up about the heartbreaking situation, saying: "It was, for me, confusing because one diagnosis led to another diagnosis, which was actually inside that diagnosis.
"It was just as a lot to take in at one time. So each time we got a new diagnosis, and we were just researching," he added.
Doctors finally determined that Wrenley was born with anophthalmia - the name for the rare condition when a baby is born without one or both of their eyes. They discovered that Wrenley doesn’t produce cortisol, a stress hormone produced by the adrenal glands.
According to the National Eye Institute, the disease can be caused by changes in genes, taking specific medicines during pregnancy, and coming into contact with harmful things in the environment.
Due to the rarity of the disorder, the medical team did not understand why, so they reached out to Dr. Nate Jensen - a geneticist at St Louis Children's Hospital - to uncover something he had never come across.
Genetic testing revealed that Wrenley had a condition known as haploinsufficiency of the PRR-12 gene, which led her eyes to not develop in the womb. Experts estimate that only 30 cases have been reported in the world.
"This is an incredibly rare condition, there’s less than thirty cases described in the world," Jensen explained. "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."
Experts are unsure what causes abnormalities of the PRR-12 gene, but they said the parents didn't cause it, nor could they have done anything that would have prevented it, with Jensen adding: "It's totally random."
The family is now focusing on helping their beloved daughter navigate the world without her vision so every night, the little tot sleeps in one of her parent's shirts to get used to their scent.
"Well everybody, they learn through vision, they learn by seeing things - so with her, she’s going to have to learn how to feel her surroundings and smell her surroundings," Taylor said. "It’s hard for us to visualize what life would be like if we could not see. If someone took my vision, I’d be devastated. But for her, because I know what vision is, I’ve lived with it my whole life but for her, this is just her normal."
The family has set up a GoFundMe and the costs will go to the 300-mile round trips from their home in Poplar Bluff to the hospital in St Louis, as well as medical costs for their baby girl.
As of the time of writing, $15,890 has been raised from the $20,000 target.