- Associated Press - Saturday, February 7, 2015

PEORIA, Ill. (AP) - His father, Kyle Jackson, is looking for toys that make noise and vibrate.

His mother, Brania Jackson, says she looks forward to becoming bilingual - speaking English and braille.

And his maternal grandmother has evolved from not ready for grandparenthood too eager to share her “angel” with the world. The world may be interested, particularly the medical world.

Jordy Jah’meir Jackson was born Nov. 10 at OSF Saint Francis Medical Center without eyes.

At first, doctors thought the baby just wasn’t ready to open his eyes. “Everything seemed perfect to me,” says his maternal grandmother, Niatese Giles. “I fell in love all over again. I wasn’t alarmed until the next day.”

By the next day, extended family members took to Internet searches and doctors sent the baby to the neonatal intensive care unit and began searching for clues. The baby’s family soon discovered the same genetic disorder doctors diagnosed, bilateral anophthalmia.

“It’s extraordinarily rare,” says Dr. M. Jawad Javed, a neonatologist at Children’s Hospital of Illinois on the St. Francis campus. The condition can occur in one eye or it can cause very small, underdeveloped eyes.

“But to have no eyes develop is extremely rare. I can safely say 95 percent-plus of physicians have never seen this, even the opthalmologists we’ve talked to have never seen a case like this.”

Nothing in Brania Jackson’s sonograms or other prenatal care hinted at problems. Even more unusual, according to Dr. Javed, genetic tests and an MRI of Jordy’s brain show nothing out of the ordinary, though he will have to be monitored.

A gene abnormality, SOX2 Syndrome, is one of the major causes of anophthalmia and related disorders. But that didn’t come up in early tests.

“I just think it’s a mutation - a strange, unexplainable mutation,” says Dr. Javed. He and other doctors plan to submit a case study for publication in medical journals.

Jordy’s family calls him a blessing.

His face has the content expression of a baby doll with close-stitched eyes. His father named him after a Green Bay Packers receiver, though his father’s favorite team is the Seattle Seahawks.

Kyle Jackson and a doctor’s kind words dissolved his mother’s initial fear and sadness at the birth of a baby with no eyes. Jordy himself melted his grandmother’s initial displeasure with the idea of a pregnant, teen daughter.

“At first, I thought ‘Why me?’ Then I thought, ‘Why not me?’” says Brania Jackson, a junior at Peoria High School who also works at McDonald’s.

She says she’d probably still be crying if it weren’t for her boyfriend’s support and the doctor who told her he’d rather have ears than eyes. With ears, he could enjoy the beauty of listening.

The couple say Jordy’s other senses are noticeably strong. They are already thinking about school, reading and putting bumpers around furniture when he begins crawling.

Brania Jackson’s mother says the extended families, including a godmother neighbor who baby-sits, have been amazed by the friends and strangers who have offered gifts and support. Employees of the Peoria Police Department, where Giles works for a subcontractor, have showered them with gifts. Kyle Jackson says the football team at Robert Morris College, where he is a student and player, is planning a fundraiser.

“Why not us,” Giles says, repeating her daughter’s assertion about the baby’s disorder. “We are overwhelmed and privileged. We’re going to have to adapt.”

Adaptations involve rigorous follow-up treatments.

“A lot has to happen in the first few months of life,” says Dr. Adele Schneider. Director of genetics at Einstein Medical Center in Philadelphia, she is considered an expert in anophthalmia and related disorders.

Dr. Schneider describes more extensive genetic testing and a lengthy process of stretching the eye sockets to assure the baby’s facial structure develops properly. There will be visits to ocularists, “the artists who make prosthetic eyes,” and possibly appointments with ocular plastic surgeons and genetic testing of the parents.

Local doctors have referred the family to Illinois Eye and Infirmary Center at the University of Illinois College of Medicine at Chicago. They missed the first appointment because of bad weather but they are scheduled to go soon.

Artificial eyes are usually inserted in older children, Dr. Schneider says. “But sometimes there’s an optic nerve. With that, a person can at least tell the difference between light and dark. If a child can tell the difference, you can get them on a better sleep cycle.”

Jordy’s extended family and their support networks have been eating up the kind of information Dr. Schneider provides.

The baby may be blind, but it’s the family that’s “feeling our way along,” Giles says.

___

Source: (Peoria) Journal Star, https://bit.ly/1CQONno


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