A baby born without eyes and who’s had half her brain disconnected is baffling doctors by hitting all her milestones.
Five-month-old Harlym Carter was born with anophthalmia, a birth defect in which one or both eyes don’t develop fully. Doctors discovered the left side of her brain was underdeveloped after Harlym had several seizures and performed life-changing surgery to disconnect the left side of her brain from her right.
However, her mom, Allyanna Carter, 19, from Salisbury, North Carolina, says her baby is now able to almost crawl, sit upright, and hold her head up, as well as babble and drink from a bottle.
“When I was first told about Harlym’s condition, I was heartbroken. But already, doctors are extremely surprised at how she’s doing,” said Ms. Carter, who cares for Harlym full-time.
“I was told she’d never be able to walk or talk—but she’s nearly crawling even though she can’t use the right side of her body. She’s the best baby ever and so talkative!
“At first I automatically assumed her conditions had something to do with me; any mum is going to blame herself. But doctors told me there wasn’t a clear reason why she was born with so many conditions—it’s just genetics.”
Ms. Carter found out she was pregnant in November 2022 and had a healthy pregnancy all the way through. She was told Harlym looked “perfectly healthy” at her 20-week scan and had no idea about her baby’s health problems until she gave birth.
“I didn’t know she had any conditions during my entire pregnancy,” Ms. Carter said. “I had a perfectly healthy pregnancy—no complications. Every pregnancy scan I was told she looked fine.”
Ms. Carter went into labor on July 21, 2023, and gave birth to Harlym the next day. Doctors immediately took Harlym away to clean her and pulled Ms. Carter’s mother, Kacie, 40, aside. They told her there was a possibility Harlym had been born without eyes but we were still unsure whether the baby’s face was just really swollen.
Harylm’s grandma was informed the newborn would be sent for a CT scan the following day—and she was left to break the news to her daughter.
“I wasn’t paying attention to what the doctors were telling my mum,” Ms. Carter said: “I was just holding Harlym, having quality time with my baby.”
At 1 day old, Harlym had a seizure, and the CT scan confirmed she'd been born without eyes.
“I was absolutely heartbroken. I was thinking about how she'd never be looked at as regular,” Ms. Carter said. “It was very hard for me, but when she was transferred back to the NICU [neonatal intensive care unit], I was told she had a lot of other conditions, and I thought—I’m going to love her anyway.”
Harlym was born with several other rare health conditions, some of which haven’t yet been officially identified or named. One of those is galactosemia, an inability to break down sugars, and has to be fed through a tube. She also has choanal atresia, where the nasal passages are blocked by bone, causing severe breathing problems.
The tot underwent a hemispherectomy, a surgery in which one side of the brain is removed or disconnected from the other, to stop her seizures in August this year. This has left her with a permanent weakness in the right side of her body.
“Doctors were constantly telling me to think about Harlym’s quality of life, but I didn’t just want to pull the plug,” the mom said. “They said she wouldn’t be able to talk or walk, use the right side of her body—and she’d have global delay.”
However, the mom says her little daughter is doing a lot better than expected.
“She copies everything I do, like blowing bubbles with my tongue or whistling,“ Ms. Carter said. ”It’s all a good sign—doctors didn’t think she’d have any type of brain activity.
“Above all, she’s so happy. She loves everybody, she laughs at everything—and she loves being held.”
Ms. Carter aims to enroll Harlym in a mainstream school when she’s old enough, and she constantly helps her work on her brain function, though she does still feel sad her daughter can’t see.
“It definitely bothers me every day,” she said, adding that they recently went to see Christmas lights, but Harlym couldn’t see them. “I just kept thinking about all the things she’s going to miss out on.”
