Baby born without Eyes
At 17-year-old Brania Jackson gave birth to her son and held him for the first time, the newborn never cried or opened his eyes.
Physicians thought nothing of it initially, until they lifted his eyelids for an examination and saw only flesh underneath.
Jordy Jackson was born Nov. 10 without eyes, a shock to his family and physicians at OSF St. Francis Medical Center in Peoria, about three hours southwest of Chicago. He has an extremely rare congenital disorder called anophthalmia, a condition sometimes caused by genetic anomalies.
"I didn't know what to do, didn't know what to say, didn't know what to feel emotionally," said Jackson, a high school junior, as she and her boyfriend, Kyle Jackson, 18, were feeding their son in her Peoria Heights home.
Amid the whir of midnight bottles, diaper changes and schoolwork, the young parents and their families are preparing for an intense schedule of visual, occupational and physical therapies for Jordy. Unlike some who are blind or visually impaired but still have eyes, he was born into total darkness without even the ability to perceive light, the sensation that helps guide circadian rhythm and separates day from night.
Family members — who knew the unanticipated pregnancy would be challenging from the start — quickly rallied to support the newborn upon learning his diagnosis, calling him "a blessing." And as Jordy learns to roll over and crawl and walk without sight, his mother and father say they'll be learning to read and write in Braille.
Last week, Jordy's family took him to his first appointment for cosmetic treatments — and eventually prosthetic eyes — at the Illinois Eye and Ear Infirmary at the University of Illinois College of Medicine at Chicago. Brania Jackson is excited to one day see her son's face with irises and pupils just like other children, though she knows he won't be looking back.
Jordy's relatives list the sights they wish they could show him. The sky. The ocean. Colors. Beautiful things. And his family.
"All the people he loves and who love him," said his grandmother Niatese Giles, Brania Jackson's mother, who helps care for him. "But he will know us by feeling us."
Jackson recently had "I love Jordy" tattooed in Braille on her right shoulder blade. Everyone in the family plans to ink a similar phrase in raised bumps on their own bodies. Giles, who grew up on Chicago's South Side, said her message to Jordy will be encased in a picture of an eye.
"Because I'll be his eyes," she said.
Jordy looked like any other infant as he slept cradled in his mother's arms, but beneath his deep eyelids is just smooth, glossy flesh. The 3-month-old has no ocular tissue, optic nerve or any vestige of an eye on either side, according to a neonatologist who treated him.
When he awakened hungry for a bottle, he balled his little fists, and tiny tears streamed down his cheeks. His head tilted slightly in the direction of his mother's soft voice and the deep baritone of his father, sitting beside them. But the baby's eyelids never opened.
Brania Jackson has been dating Kyle Jackson — now a freshman at Robert Morris University in Peoria — for about two years, ever since they met at the concession stand of a football game between their rival high schools.
When morning sickness hit, she said she felt scared and overwhelmed at the prospect of unexpected motherhood. Giles was initially disappointed: She wanted this for her daughter, just much later in her life.
Despite these mixed emotions, the grandmother and parents-to-be were excited as they watched the fetus grow in a series of three ultrasounds. They said there was never a hint of any defect. Because the eyes are such a small part of the body and mainly comprised of water, anophthalmia isn't usually detected through a typical fetal ultrasound, said Dr. M. Jawad Javed, the neonatologist who treated Jordy.
He was born at 2:37 a.m. Brania Jackson said the 5-pound, 5-ounce baby never cried or opened his eyes, but she didn't think anything of it. Kyle Jackson said he was awestruck as he held his son for the first time, looking over every part of his 18 inches and counting all the fingers and toes. He never thought to lift the baby's eyelids.
The physicians and nurses initially thought the newborn just wasn't ready to open his eyes. They didn't pick up on the abnormality until he was taken to the nursery and they realized it was difficult to pry open his eyes, Javed said.
"When they opened his eyelids to do an eye examination, there was darkness underneath," said Javed, adding that after genetic testing and an MRI, the cause of Jordy's anophthalmia is still unknown.
A day after the elation of giving birth, Brania Jackson wept in her hospital bed after learning her son would never see.
Anophthalmia affects around 1 to 3 in 100,000 live births internationally, though experts say these estimates are very rough. And anophthalmia of both eyes like Jordy's is considered even rarer: In some cases the condition can affect one eye, or the eyes can be present but extremely small, a related disorder called microphthalmia.
Relatives began reading about the condition online — and grew more fearful as they realized it can be present with other abnormalities of the body and brain.
"I couldn't fix it," Giles said, tearing up at the memory. "And that broke my heart. Because she's still my child, even though she's a mom too."
Brania Jackson recalled holding the newborn in the neonatal intensive care unit, as relatives formed a circle around her, clasped hands and prayed for her son. Around them were other infants on feeding tubes and ventilators. They knew that not all infants in the NICU get to go home and, despite their sorrow that Jordy would never see, they were grateful his life wasn't at risk.
Then there was joyful news: An MRI and further examinations indicated Jordy's brain was functioning typically and there were no other significant abnormalities, though physicians will continue evaluating his development as he grows, Javed said.
"I'm not sad for Jordy," said his grandmother Gena Chatmon, Kyle Jackson's mother. "There's no reason to be sad for Jordy. We're grateful he's here. God doesn't make mistakes."
A prosthetic eye is an amazing thing — a customized, detailed work of art mimicking the look of the natural eye, down to the pattern of veins crisscrossing the white of the eyes, said Dr. Pete Setabutr, director of Oculoplastics and Reconstructive Surgery at the University of Illinois College of Medicine at Chicago.
"When a person with a prosthetic is walking down the street, a majority of people can't tell," said Setabutr, who has treated cases like Jordy's.
He said patients like Jordy are first fitted for a series of clear plastic shells called conformers, which are placed in eye sockets to ensure the face develops properly, Setabutr said.
It will likely be years before Jordy will get prosthetic eyes that look like natural eyeballs, which patients can remove and reinsert with their own hands, prostheses that are recreated and refitted throughout life, Setabutr said
"I think there is a social aspect, not only for the family but also for the patient," he said. "It just helps to blend in socially. The eye is one of the first places you look at when you look at a person."
While growing up and learning without sight is formidable, experts say children are particularly adept at acclimating.
"Kids are really amazing in their resilience," said Dr. Brian Brooks, chief of the Ophthalmic Genetics branch of the National Eye Institute in Maryland, who has treated similar cases. "I think the child will be more adaptable than say you or I would be if we suddenly lost eyesight. This child will grow up knowing nothing else."
Jordy's relatives believe that in some ways, his anomaly could prove to be a blessing.
Chatmon thinks he'll be less vain. "He'll be more genuine than a lot of us," she said.
Giles takes comfort that her grandson will live his life without viewing horrible sights. He'll never see images of war, hunger or cruelty.
"He won't have to feel the pain that we go through," she said. "That's a beautiful thing."
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