December 12, 2008

Patient’s success story continues with CMN honor

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Reagan Rotter, 4, has been chosen to represent Tennessee in the 2009 Children’s Miracle Network Champions Across America Program. (photo by Dana Johnson)

Patient’s success story continues with CMN honor

For the first nine months of her life, Reagan Rotter was a perfectly healthy baby. But one summer morning she did something very unusual.

“She looked up, and her eyes missed me,” said her mother, Susan Rotter. “They went way above my head, like she was trying to look at me but couldn't. It was bizarre.”

Physicians at the Monroe Carell Jr. Children's Hospital at Vanderbilt found that Reagan had a craniopharyngioma, a benign brain tumor that was pressing on her optic nerve and inhibiting her vision.

Although she was not expected to see again, a quick surgical intervention restored Reagan's vision to 20/20.

Reagan, now 4, has been chosen to represent Tennessee in the 2009 Children's Miracle Network Champions Across America program, and is the third Children's Hospital patient selected for the honor.

Reagan's success story begins with her pediatrician, John Scott, M.D., with Vanderbilt Medical Group in Franklin. Although Reagan did not exhibit the unusual eye movement during her appointment, Scott sensed Rotter's concern.

“He trusted my parental instinct that something was wrong, rather than having a 'wait and see' attitude. Reagan sees again because he trusted that,” Rotter said.

Scott referred Reagan to the Tennessee Lion's Eye Center, where she was seen by Sean Donahue, M.D., Ph.D., chief of Pediatric Ophthalmology, who also recognized the urgency needed with Reagan's rapidly deteriorating vision.

“Her mother said she was a perfectly healthy and normal child a week ago, and I found that she was essentially blind. There are several things that can be present when a sudden loss of vision is experienced, and they're all bad,” Donahue said.

An MRI revealed the golf-ball-sized craniopharyngioma, which was wrapped around her pituitary gland and optic nerve, and Reagan was immediately scheduled for surgery with Matthew Pearson, M.D., assistant professor of Neurological Surgery.

With her condition, the goal of surgery is usually to prevent further vision loss, and expectations to regain any sight are low.

“I was not optimistic she would get her vision back, but I knew the sooner we operated the better,” Pearson said.

After the surgery, her mother brought Reagan's mobile and favorite puppets, hoping to stimulate her vision.

“I was sure the nurses were thinking, 'She must be the most pathetic mother, bringing these in for this blind child,'” Rotter recalled, “but about five days later, a nurse said, 'You know, I think she saw that.' By the time Reagan was discharged, she could crawl across her crib in dim light and find her pacifier.”

Today, Reagan's vision is perfect, and she shows no neurological impairment, but her doctors will continue to monitor her to ensure the tumor does not return. Because her pituitary gland could not be saved during surgery, Reagan is also closely followed by Jill Simmons, M.D., assistant professor of Pediatrics.

“She is an extraordinarily strong, energetic little girl who started out young with considerable problems but was able to carry through with the help of her parents into a beautiful girl who is essentially as normal as any kid can be. I am thrilled every time I see her,” Pearson said.

As a champion, Reagan will travel this spring with her family to the annual CMN Celebration in Orlando, Fla., to represent her home state, take part in tapings for the national CMN telethon and visit Walt Disney World. She will also travel to Washington, D.C., to have lunch at the White House and possibly meet the President.

Rotter said she is trying to help Reagan comprehend her role as ambassador.

“It is important that she understands the gift she's been given and grasp how special she is. Her story is such a miracle. We couldn't anticipate this perfect result,” she said.

Go to to see a video about Reagan.