A girl in Missouri was born with a genetic condition that affects only 30 people in the world and left her without eyes.
Taylor Ice was delighted when she became pregnant last year after more than a year of struggling with fertility.
Throughout the pregnancy, doctors told Mrs. Ice and her husband Robert that their baby was perfectly healthy.
However, when Wrenley was born on November 6, 2023, her parents realized something was wrong.
“I noticed he wasn’t opening his eyes, so I asked the nurse,” Mrs. Ice told the local news station. KFVS 12.
“She told me, ‘Well, it’s dark in the womb, so they usually don’t open their eyes right away.’
However, Wrenley never opened his eyes.
Robert and Taylor Ice were stunned when their daughter, Wrenley, was born without eyes.
Wrenley has haploinsufficiency of the PRR-12 gene, which caused her eyes to not develop in utero
“The pediatrician is checking the baby and he just stops with his exam, looks at us and says, ‘Your daughter doesn’t have eyes,'” Ms. Ice said.
“I looked at him and said, ‘You mean they’re small?’ He says, ‘No, they’re not there.’
“I burst into tears because I couldn’t fully process what that meant at that moment.”
Although Mrs. Ice had just given birth by cesarean section, the family drove 150 miles that day to St. Louis Children’s Hospital, where they spent nine days searching for answers.
Ice said, “It was confusing to me because one diagnosis led to another diagnosis, which was actually within that diagnosis.”
‘It was a lot to take in at once. So each time we got a new diagnosis and we were just investigating.”
Ultimately, doctors determined that Wrenley was born with anophthalmia, a condition that caused him to fail to develop any eye tissue or an optic nerve, which processes visual information in the brain.
It also does not produce cortisol, a stress hormone produced by the adrenal glands.
All this made his eyes close.
“I couldn’t believe something like that had happened to us,” Mrs. Ice said.
The same day Mrs. Ice gave birth to Wrenley, the family drove 150 miles to St. Louis Children’s Hospital, where they spent nine days searching for answers.
Later this week, Wrenley will undergo surgery to open his eyelids and place prosthetics where his eyes would be to help his facial structure develop normally.
Genetic testing showed that Wrenley had a condition known as haploinsufficiency of the PRR-12 gene, which caused her eyes to fail to develop in utero.
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 is a spectrum of how it affects patients. Some patients with the same genetic change have one eye affected. (The eye) could be entirely absent, as in Wrenley’s case, or it could simply be smaller.’
“In this case, both eyes are affected and both are completely absent.”
Dr. Jensen said that while 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 genetic mutations.
Dr. Jensen estimates there is a 50 percent chance that Wrenley could pass the disease 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 would have prevented them.
“There is nothing that Wrenley’s mother or father did to cause this,” Dr. Jensen said. “Neither of us could have done anything to prevent it; it’s totally random.”
No treatment can restore the eyes, so doctors focus on giving babies prosthetics to help them live relatively normal lives.
The family has launched a GoFundMe to cover the 300-mile round trips from their home in Poplar Bluff to the hospital in St Louis, as well as medical costs as Wrenley grows.
Later this week, Wrenley will undergo surgery to open his eyelids and place prosthetics where his eyes would be to help his facial structure develop normally.
“It’s like you have the whole world in your hands,” Mr. Ice said. “In the long run, I feel like we were the ones chosen to help her on her journey and that we would learn from her too.”
The family is now focused on helping Wrenley navigate the world without his vision. Every night she sleeps wrapped in one of her parents’ t-shirts to get used to her smell.
“Well, everyone learns through vision, they learn by seeing things, so with her she will have to learn to feel and smell her surroundings,” Mrs. Ice said.
‘It’s hard for us to visualize what life would be like if we couldn’t see. If someone took away my vision, I would be devastated.
“But for her, this is just normal.”