An artist mom was heartbroken to learn that her newborn son's striking eyes were actually a sign of a rare congenital condition.
Sonny Stubbs and her husband, Ben, are the proud parents of their son Emerson, 2, and his younger sister Scout, who is just 5 months old.
While Ben works as an award-winning tattoo artist, Stubbs has her hands full as a stay-at-home mom to their two young children. "We spend a lot of time outside blowing bubbles and walking around the neighborhood and also watching Ms. Rachel," she told Newsweek.
Every parent's journey is different and comes with its own unique set of challenges. Looking back on the day Emerson was born on Sept. 6, 2024, Stubbs recalls it being "kind of chaotic." "I had to have an emergency C-section," she said. "I got to hold Emerson for the first time about six hours later, and he was just so beautiful and so tiny. No one, not even his pediatrician, noticed anything unusual about Emerson's eyes on the day he was born."
As time passed, however, Stubbs couldn't help but notice something distinctive about Emerson's eyes. Yet the fact that it had been completely missed by everyone at the hospital made her doubt herself. "I honestly thought I was overreacting, and he was so little I just thought they would change as he got older," she said.
It wasn't until Emerson was 2 months old, during an appointment with his pediatrician, that Stubbs decided to raise her concerns. The pediatrician examined Emerson's eyes and immediately referred him to a specialist.
Emerson was eventually diagnosed with bilateral chorioretinal coloboma.
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Coloboma is a rare congenital eye condition that develops when part of the eye does not form properly during early pregnancy. A comprehensive clinician review published in Nature in 2021 explains that the condition occurs when the embryonic fissure, a structure involved in eye development, fails to close completely, leaving a gap or missing section of tissue within the eye.
Coloboma can affect several parts of the eye, including the iris, retina, choroid and optic nerve. When the iris is involved, it can create a distinctive keyhole-shaped pupil, often making a baby's eyes appear especially striking or unusual at first glance. A 2011 study published in JAMA Ophthalmology found that ocular coloboma is extremely rare, affecting roughly one in every 2,000 to 2,500 live births.
Stubbs said that when the specialist diagnosed Emerson, he warned the family that their son would have "very limited vision." The news left her terrified. "I thought of the worst-case scenario instantly," she said. "My anxiety about his condition was pretty intense at first because all I could think about was his quality of life."
Stubbs and Ben are both avid artists. "I just kept thinking, 'What if he can't even see well enough to draw?'" she said.
Thankfully, two years on from that initial diagnosis, Stubbs is feeling more optimistic about her son's condition. Subsequent tests indicate that his optic nerve has not been affected.
Doctors do not believe he has central vision, however, meaning he may struggle with the straight-ahead part of sight that allows people to see fine details clearly. For now, much of the situation remains a waiting game. "He has been diagnosed as legally blind," Stubbs said. "In vision therapy, we do believe he has blind spots, but we also believe he is seeing more than doctors ever thought possible. With coloboma, it's hard to know anything for sure until children can talk to us about it themselves."
In the meantime, the family is making the most of life together. Emerson's eyes are distinctive, and Stubbs said they are often approached by people asking about them. "People usually just say, 'He has the most beautiful eyes,'" she said. "We have had a kid or two ask something like, 'What's wrong with his eyes?' But mostly it's been all positive."
Stubbs never shies away from answering questions about her son. "Most people are genuinely curious because they've never seen it before," she said.
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She decided to share Emerson's story to give hope to other parents facing a similar diagnosis and to show how her son is able to live life to the fullest and, above all else, be happy. "There hasn't been one single thing that he hasn't been able to accomplish because of his visual impairment," Stubbs said. "I raise him exactly the same way I raise my able-bodied daughter, teaching both of them that they can do anything they put their minds to."
She believes the biggest challenge facing parents in her position is patience. "You don't get answers right away, and you just have to accept that," she said. "I would love to be in complete control of his eye health, but that's just not possible. He may have to look at things a little more closely, but he really is able to do anything he sets his mind to."