Hoping for a pain-free future

For four years, ever since he was a newborn, Tate Lewis' family has hoped that he could keep his left eye despite a congenital defect that renders it blind.

But through his toddler years, his eye has started to shrink, and he has grown bony tissue that makes it constantly painful and irritated.

Sometime next month, surgeons will remove the eye and replace it with a prosthetic.

It will mark the end of a long, painful journey, but it also brings hope that Tate can lead a more normal, pain-free life, said his mother, Jenn Lewis.

She said she never thought she'd be looking forward to having the eye removed.

"It will be such a relief to know he won't have that pain anymore," she said. "He's such a trouper. I can't imagine what it's like for him being in pain all the time."

Tate was diagnosed as a newborn with Persistent Hyperplastic Primary Vitreous, or PHPV. More recently referred to by doctors as persistent fetal vasculature, the disorder begins in the developing child as early as the first trimester of pregnancy, said Richard Gray Weaver Jr., Tate's ophthalmologist at Wake Forest University Baptist Medical Center.

The normal eye contains a clear jelly in the back of the lens called vitreous. In children with PHPV, the jelly is not clear, but hazy, blocking light passing through the eye and leading to blurred vision.

In most cases, such as Tate's, only one eye is affected, and that eye is usually blind, Weaver said.

As the child gets older, other complications can develop, including glaucoma and degeneration of the eye.

The Lewises live in Clemmons. Jenn Lewis is a reservations agent for US Airways and also runs her own photography business. Her husband, Todd, is a civil engineer for the city of Winston-Salem.

Tate has two older brothers, Jake, 10, and Noah, 8.

Tate wears glasses not to correct his vision but to protect his eyes — in addition to the PHPV in his left eye, Tate also has a condition in his right eye that could make the retina susceptible to becoming detached.

Jenn Lewis said that can be a problem in a houseful of boys who tend to be rambunctious. She said she's tried to warn the boys about playing rough but also wants Tate to have a normal childhood. Both of his brothers play soccer, and Tate started playing as well this year for team at the YMCA in Clemmons.

"It's a difficult balance," Jenn Lewis said. "I do have to constantly remind them that they have to be careful. But at the same time I don't want to put a bubble around him."

On the day he was born, Todd Lewis noticed that his son wasn't opening his left eye.

Exams showed that in the left eye Tate had a small cornea, a cataract, blood in the back of his eye, and a scar-tissue "stalk" from the lens to the optic nerve area, Weaver said.

Still a baby, Tate had surgery that removed the lens and cleared the blood from the eye.

After that — for more than three years — Tate went for the most part without complications. The family knew there was always a possibility that the eye would eventually have to be removed, but Jenn Lewis said she always held hope that it was only a possibility.

But in July, problems started to develop, she said. Tate got sick, started vomiting and complained that his eye was hurting.

She knew there had to be a serious problem because despite all that he had been through, Tate rarely complained about his eye.

"He's got a real high pain tolerance," she said. "If he's complaining, that's really bad."

A new round of testing showed that the pressure in his eye was as much as three times the normal pressure. He also had calcium buildups on his cornea and more tissue developing in the back of the eye, both of which gave him the feeling that there was something irritating in his eye that he couldn't get out.

In November, after consulting with Weaver, the Lewises decided Tate's eye must come out.

"That was the longest drive home in the world," Jenn Lewis said.

To help deal with the pain and explain to others what her son was going through, Jenn started writing about their day-to-day dealing with PHPV in a blog called Jenn's Constant Ramblings.

Lewis said she's trying to remain positive about the pending surgery, and has tried to pass along that positive attitude to her son, and he has started to accept it.

"I told him, 'You know what's going to be really cool? You're going to be able to scare your brothers' " with the prosthetic eye, she said. "That was a turning point."

Weaver said the decision to remove an eye is the final step of a difficult course for most patients, but that removing the source of discomfort for a child who has known nothing but pain can bring dramatic results.

"One of the most gratifying things is the next day when you walk in the room after the surgery and they're smiling and laughing, and the parents say he's changed," he said. "When you relieve the pain, it changes them. … Hopefully that's going to happen with him."

pgarber@wsjournal.com

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