Restoring Ian’s SightIan leaned into the wall mirror, put his face against it, stuck out his tongue and stared. “Wow, look at that,” he said in awe.
His mother cried.
Though he was four and a half years old, he acted as if he were seeing himself for the first time. And he may have been, having just undergone the first of two surgeries on his eyes to repair dislocated lenses that caused him to see only a blurry sliver of what others could see.
Ian was two when his mother Eva noticed that her son’s eyes jiggled. If she asked him to pick up a toy on the floor, he would bend down and grasp at nothing. If she pointed at a cow or horse on a nearby farm, he reacted in frustration: “Where, Mommy? I don’t see it!”
Like his mother, Ian has Marfan syndrome. The rare genetic disorder is associated with weak connective tissue, including that of the eye. The connective tissue in Ian’s eye was so weak that his lens became dislocated. At 2 years old, Ian began wearing glasses with thick lenses.
As Ian grew, the dislocation was expected to worsen and eventually result in aphakia — the absence of the lens of eye.
But when his family learned about another option, they agreed to be part of a study at Nationwide Children’s to restore the vision of children with Marfan syndrome and other disorders resulting in aphakia.
Aphakic Intraocular Lens for ChildrenAs part of a multicenter study that began in 2014, Richard P. Golden, MD, ophthalmologist and principal investigator at Nationwide Children’s, is surgically implanting the Artisan Aphakia Intraocular Lens into the eyes of children with dislocated lenses.
The Artisan Aphakia lens is unique because it is fixed to the iris and, therefore, allows for lens implantation in patients who do not have the support structure for a traditional implant. Without an implant lens, these children must wear extremely strong and cosmetically unappealing glasses or highly customized, and often poorly tolerated, hard contact lenses.
“These patients now have an option to live with much more normal visual function,” Dr. Golden says. “These lenses are not yet FDA approved, but we expect this study will help gain approval.”
Nationwide Children’s is the third largest enrollment site across the country with 36 lenses implanted in 19 patients.
The new lens is intended to adapt to a growing child and last as the child ages. The surgery is typically done in patients between 8 and 18 years of age, but it has been done in children as young as 2 years old.
According to Dr. Golden, the Phase 3 trial is still underway and the team will be following these patients for five years after the procedure to assess the ability of the implanted lens to correct refractive error caused by aphakia.
Since having had a new lens implanted in each eye, Ian is more curious and delights in discovering what he could not see before. He loves video games that used to frustrate him. And when he’s sitting at the top of a water park slide, now he can see his parents below as he yells: “Look at me!”