Out of the Darkness

Born with a rare form of blindness, Dylan is finding his own way ...

By Cynthia Dermody

From Reader's Digest

Images from this article

Photographed by Shannon Taggart

Mom Karen Jacobson with Dylan at eight months old.

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Photographed by Shannon Taggart

Dylan's ocularist, an artist who crafts and paints artificial eyes, painlessly inserts acrylic shells under the baby's lids to make sure his face will form properly.

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Photographed by Shannon Taggart

Therapist Mi Koo is teaching Dylan how to talk by using mechanical cues.

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Photographed by Shannon Taggart

"Dylan does so many things other kids do," says his dad, Jeff, "sometimes I forget he can't see."

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Photographed by Shannon Taggart

Mom Karen Jacobson with Dylan at eight months old.

"Why Doesn't Our Baby Open His Eyes?"

Jeff and Karen Jacobson felt it the moment they laid eyes on their newborn son—that pang in the gut that tells you something is wrong before the fact registers in the brain. As the doctor lifted the squirming baby up and over the drape blocking their view of the cesarean, the couple noticed their son’s eyelids were unusually small and were scrunched tightly shut, like buttonholes on a shirt. Everything’s fine, they were told as the nurse scuttled the baby away. But as Karen, 35, lay there, groggy from drugs, Jeff at her side holding her hand, all they could think was, Why doesn’t our baby open his eyes?

Karen Jacobson, the type of woman who likes everything to go according to plan, was getting pretty good at dealing with life’s surprises. In 2002, after two unsuccessful attempts at artificial insemination, the former schoolteacher and her husband, Jeff, an accountant, decided to take a break. Wouldn’t you know it? Within a month, she was pregnant with twins. Strawberry-haired Zachary and blonde Danielle, the spitting image of her mother, were born in January 2003. It was happy news when, just 18 months later, the Demarest, New Jersey, couple learned they were expecting another completely natural set of twins.

Karen underwent all the tests she had during her first pregnancy, and then some: an amniocentesis, a blood scan for birth defects, numerous ultrasounds. By all indications, she was expecting two healthy, perfect babies.

May 24, 2005, was the big day. With Jeff at Karen’s side, obstetrician Sharon Patrick performed Karen’s planned C-section. Within ten minutes, Dr. Patrick scooped out baby Jenna. Jeff snapped a picture before Dr. Patrick clamped the squealing girl’s umbilical cord, cut it and handed her to a pediatrician. Minutes later, Dr. Patrick carefully lifted out baby No. 2: Dylan. Soon the mood in the operating room started to change.

The pediatrician checked Dylan’s lungs and gave him a cursory once-over. The baby’s eyes were still closed, but since that’s not too uncommon for a newborn and because everything else checked out fine, she turned him over to nurse Sharon Mendez to tag and footprint. As Mendez worked on the baby, she noticed a small, sunken look around his eyes. She had an idea what was wrong but needed to call the pediatrician back for a second look. She returned with the doctor, who, upon taking a closer look, confirmed her suspicions.

The Jacobsons noticed the nurse whispering, staff walking in and out of the room, the lighthearted chatter turning hushed. “Is everything okay?” Karen and Jeff repeatedly asked Dr. Patrick, still partially hidden behind the drape.

“I think everything’s fine,” Dr. Patrick said, stalling. “Let me just focus on you, and then I’m going to take a look at your babies.”

After putting gauze over Karen’s stitches and covering her with a blanket, Dr. Patrick pulled up a chair and sat down next to her. Looking Karen straight in the eye, Dr. Patrick started to speak. “There’s a problem with your son,” she said. “He doesn’t appear to have any eyes.”

Still under the fog of sedatives, Karen tried to let the doctor’s words sink in. She just lay there and stared, unable to speak. Eventually the tears started to come.

When Jeff came in after removing his scrubs down the hall, Dr. Patrick broke the news to him. Shaking his head, he looked at Dylan, asleep in the bassinet, then turned to Dr. Patrick: “How could this happen?”

Dr. Patrick explained that something had gone awry very early on in the baby’s development.

“I was so distraught and emotional, I didn’t quite grasp what everyone was telling me,” Jeff remembers. “I wasn’t sure if that meant the eyes would form eventually, or if they could do some sort of transplant, or if there was anything in there at all.”

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