Parents Welcome Baby Girl, 4 Months Later They Realize Something Is Wrong
The mother of a 6-year-old girl has shared the story of learning her daughter was born blind, and how far they have come together as a family.
Skin specialist Hayley Steinbach, 30, lives in Essex in the U.K. with her builder husband, Zak, 31, and their three children, including daughter Elsie. She was diagnosed with optic nerve hypoplasia as a baby—but getting that initial diagnosis was far from easy.
"The moment I realized Elsie, at 4 months old, wasn't tracking anything properly, I was so confused and concerned," Steinbach told Newsweek. "Our doctor had told me eight times that Elsie's eyes were OK, and it was just a blocked tear duct."
Elsie is the couple's first child, and so the new parents were "unaware of how delayed her vision was—we thought it was normal eye behavior for a newborn."
But when Steinbach realized her daughter wasn't able to give her any eye contact at all, she returned to the doctor and pleaded for help. This time, the doctor shared her concern, and asked her to step out of the room as he made an immediate hospital appointment for the baby girl.
"As soon as I walked out, into the waiting room, I broke down and rang for my husband to come immediately as my legs went to jelly—I was so scared for Elsie," Steinbach said.
"Five days later she was diagnosed with optic nerve hypoplasia. We had no idea what this condition was, and what this meant for our baby girl."
Optic nerve hypoplasia is a congenital disorder where the optic nerves in the eye are underdeveloped. While the cause of ONH is not yet understood, it can lead to abnormal eye movements, and can lead to a person having no light perception at all, according to the National Organization for Rare Disorders (NORD).
Left, Hayley Steinbach, Zak embrace Elsie on the day she was born; and, right, the baby aged 6 weeks.
Left, Hayley Steinbach, Zak embrace Elsie on the day she was born; and, right, the baby aged 6 weeks.
TikTok @elsieseyearmy
Recalling those terrifying early days, Steinbach said: "My world went black and went quiet like when someone dies—I felt heartbroken and gut sick. I was terrified for Elsie, and I had no idea what was best for her. We were new to becoming parents, and now we were new to how to help someone who's blind.
"I'd never even met a blind person before, never knew what Braille was. We were completely clueless, which made it so scary—and no one else around us could help us, no one around us knew what was best for Elsie or how any of us could help Elsie the best."
The couple were "so worried and scared for her future"—but, together, the family got through it. Steinbach and Zak learned alongside Elsie as she navigated the world, including learning Braille, as they knew it would "now be a part of our life, and we would need to know it to be able to teach Elsie."
As time went on, they learned that Elsie has "no vision in her right eye, and [in] her left eye, she has minimal vision, but she uses that vision to her fullest."
"Elsie's eyesight has gone against what the consultants said and still say now; they are amazed at what she can do with the small amount of vision she does have," proud mom Steinbach said. She added that Elsie's optic nerves are the "same size in both eyes," so it is a "miracle" she has any sight in her left eye.
Elsie now wears glasses to help her left eye with long-sightedness, and uses both Braille and size-72 text to read and work at school. And, close to seven years after that first terrifying diagnosis, her mom says Elsie has "made all my thoughts and worries go away."
"There is nothing she's not able to do like a child her age, but she just does it in her own little way and is teaching us along the way.
"Elsie is full of confidence and no fear; she does everything! I never imagined her life to be so 'normal'. Elsie is incredible and amazes us every single day; she is the happiest little girl you could meet."
The little girl, described as "extremely confident," is now an older sister to Dolsie, 3, and 2-year-old Elvis, and has big plans for her life, as her mother said her daughter "wants to be a performer—acting, singing, dancing."
Left, the family smile on a trip to Disney not long after Elsie's diagnosis, and right, the girl now, aged 6.
Left, the family smile on a trip to Disney not long after Elsie's diagnosis, and right, the girl now, aged 6.
TikTok @elsieseyearmy
Steinbach shared Elsie's story to her TikTok account, @elsieseyearmy, where she wrote in a caption that she hopes it can "help families in [those] dark few months see that being blind won't stop your baby from doing anything."
It had a major online reaction, racking up close to 3 million views and more than 92,000 likes, as commenters flocked to the video asking questions about Elsie and her journey, and some sharing their own experiences with ONH.
A fellow parent wrote: "My little boy was thought to be completely blind for life but is now just completely blind in his left eye and has 6/38 vision in his right and gets on with life almost as a normal sighted child, I don't understand how but he's amazing."
Another urged Elsie's parents to continue to "love her and encourage everything, be her biggest cheerleader," as a third posted: "What absolutely beautiful parents you are. She is utterly perfect in every way."
And as one comment read: "Sweet Elsie! I wish you a life full of joy and happiness in the best form available! God Bless you!"
Steinbach said: "I think mine and my husband's worries for Elsie will always be there; through every stage of Elsie's life, we will worry she will struggle and come up with more challenges. But, with Elsie's personality and determination, we know Elsie will not let anything affect her—it will affect us more as parents watching her."
In a message to everyone learning about Elsie's story, Steinbach added: "Elsie is blind, despite the small bit of vision she does have.
"Being blind does not mean seeing nothing; it means being severely sight-impaired, like Elsie is. Being blind does not stop Elsie from doing anything; she just does it in her own way."
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