Baby girl born without eyes due to ‘incredibly rare’ condition say doctors
After struggling with fertility issues for years, Taylor Ice was elated to discover last year that she was expecting her first child.
The Missouri mum was informed by medics every step of her pregnancy that her child was healthy.
It was only when their little girl was finally welcomed into the world via Cesarean section in November 2023 that Taylor and her husband Robert discovered something was wrong.
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Speaking to local news outlet KFVS 12, the new mother said: "I did notice she wasn’t opening her eyes, so I asked the nurse.
"She told me, "Well, in the womb, it’s dark, so they don’t normally open their eyes right away."'
Despite initial speculation, the couple were soon told that their baby would never open her eyes because she didn't have any.
Their baby daughter - who they later named Wrenley - had actually been born with an extremely rare genetic condition.
Taylor said she was initially confused by the paediatrician's assertion that Wrenley didn't have eyes, believing that he was implying they were 'just very small'.
"I just burst into tears because I just couldn’t fully process what that meant at the time," she admitted.
She and Robert then spent the next nine days desperately searching for an explanation for why her daughter had been born without eyes.
Robert told the outlet: "It was, for me, confusing because one diagnosis lead to another diagnosis, which was actually inside that diagnosis.
"It was just as lot to take in at one time. So each time we got a new diagnosis, and we were just researching."
After several weeks, doctors found Wrenley had anophtalmia - a condition where a baby is born without eye tissue or an optic nerve.
Doctors also found that little Wrenley couldn't produce the stress hormone cortisol.
According to a GoFundMe set up by Taylor, Wrenley was later diagnosed with Septo-Optic Dysplasia and haploinsufficiency of PRR12 - which, according to Dr Nate Jensen, a geneticist at St Louis Children's Hospital, has 'less than thirty cases described in the world'.
Even though Taylor's pregnancy went smoothly, Dr Jensen said there was 'nothing Wrenley’s mother or father did to cause this' and it was totally 'random'.
Speaking about PRR-12, Dr Jensen said it affects patients differently, with some being born with 'one eye affected' or some, like Wrenley, having them 'totally absent'.
However, there is very limited research into the condition - and there is a possibility that it could impact her development.
Despite the news, the couple are still over the moon with their precious daughter.
"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," Robert said.
Taylor added: "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 - this is just her normal."
In the GoFundMe, Taylor said Wrenley would need to have surgery to un-fuse her eyelids for spacers to be put in to allow her facial structure to develop, which they would be travelling to St. Louis for these appointments.
You can donate to the GoFundMe here.
Rhianna Benson