Missouri Parents Stunned After Baby Daughter Is Born Without EYES: Baby Has Rare Genetic Condition Known to Affect Only 30 People in the World
A girl in Missouri was born with a genetic condition that affects only 30 people in the world, leaving her without eyes.
Taylor Ice was overjoyed when she got pregnant last year after struggling with fertility for over a year.
During her pregnancy, doctors told Mrs. Ice and her husband Robert that their daughter was perfectly healthy.
However, when Wrenley was born on November 6, 2023, her parents realized something was wrong.
“I noticed she wasn’t opening her eyes, so I asked the nurse,” Ms. Ice told the local news station KFVS 12.
‘She told me, “Well, in the womb it’s dark, so normally they don’t open their eyes right away.”
However, Wrenley never opened her eyes.
Robert and Taylor Ice were stunned when their daughter, Wrenley, was born without eyes
Wrenley has a haploinsufficiency of the PRR-12 gene, which prevented her eyes from developing in the womb
“The pediatrician examines the baby, just stops his examination, looks up at us and says, ‘Your daughter has no eyes,’” Ms. Ice said.
“I just looked at him and said, ‘You mean they’re small?’ He says, ‘No, they’re not there.'”
“I just burst into tears because I just couldn’t quite process what that meant at the time.”
Even though Mrs. Ice had just given birth by cesarean section, the family drove 150 miles to St. Louis Children’s Hospital that same day, where they searched for answers for nine days.
Mr Ice said: ‘It was confusing to me because one diagnosis led to another diagnosis, which was actually within that diagnosis.’
‘It was the same amount to record in one take. So every time we got a new diagnosis, and we were just investigating.”
Ultimately, doctors determined that Wrenley had been born with anophthalmia, a condition that left her unable to develop eye tissue or optic nerve, which processes visual information in the brain.
She also does not produce cortisol, a stress hormone produced by the adrenal glands.
All this caused her eyes to be closed.
“I couldn’t believe something like this happened to us,” Ms. Ice said.
On the same day Mrs. Ice gave birth to Wrenley, the family drove 150 miles to St Louis Children’s Hospital, where they searched for answers for nine days.
Later this week, Wrenley will undergo surgery to open her eyelids and place prosthetics where her eyes would be to allow her facial structure to develop normally.
Genetic testing revealed that Wrenley had a condition known as haploinsufficiency of the PRR-12 gene, which prevented her eyes from developing in the womb.
Experts estimate that only 30 cases have been reported worldwide. “We had a better chance of winning the Powerball,” Ms. Ice said.
Dr. Nate Jensen, a geneticist at St. Louis Children’s Hospital, told KFVS 12, “This is an incredibly rare condition.”
“There’s a spectrum of how patients are affected by it. In some patients with the same gene change, one eye is affected. (The eye) may be completely absent, as in Wrenley’s case, or it may simply be smaller.”
‘In this case, both eyes are affected and both are completely absent.’
Dr. Jensen said that although research on PRR-12 is extremely limited, it could cause intellectual and developmental delays.
Although Ms. Ice’s pregnancy was normal, the parents could have unknowingly passed on gene mutations.
Dr. Jensen estimates there is a 50 percent chance that Wrenley could pass the condition on to her future children.
Experts aren’t sure what causes the PRR-12 gene abnormalities, although they believe nothing the Ice family could have done could have prevented it.
“There is nothing Wrenley’s mother or father did to cause this,” Dr. Jensen said. “There’s also nothing we could have done to prevent it; it’s totally arbitrary.’
No treatment can bring the eyes back, but doctors are instead focusing on giving babies prosthetics to help them live relatively normal lives.
The family has one GoFundMe to cover the 300-mile roundtrip flights from their home in Poplar Bluff to the hospital in St. Louis, as well as medical expenses as Wrenley grows.
Later this week, Wrenley will undergo surgery to loosen her eyelids and place prosthetics where her eyes would be to allow her facial structure to develop normally.
“It’s like you have the whole world in your hands,” Mr. Ice said. “In the long run, I feel like it was us who were chosen to help her along the way and that we would learn from her as well.”
The family is now focused on helping Wrenley navigate the world without her vision. Every night she sleeps tucked into one of her parents’ shirts to get used to the smell.
“Well everyone, they learn through vision – they learn by seeing things – so with her she’s going to have to learn how to sense her environment and smell her environment, Ms. Ice said.
‘It’s hard for us to imagine what life would be like if we couldn’t see. If someone took my vision away, I would be devastated.”
“But for her, this is just her normal.”