Our patients’ stories: Overcoming Duane syndrome

On Tuesday, June 21 at 6pm ET, Children’s Ophthalmology team will present a live, free, interactive webcast on Duane syndrome, a rare type of strabismus that causes a misalignment of the eyes. The webcast will include an overview of the eye condition and will present the case of Claire Kelly and the surgical procedures used to realign her eyes. Click here to watch the webcast, and read on for Claire’s story.

Claire Kelly before her superior rectus transposition surgery
Claire Kelly may have been born with Duane syndrome, a rare type of strabismus that causes a misalignment of the eyes, but she wasn’t aware of her condition until a less-than-subtle classmate brought it to her attention when she was 6. “One day in kindergarten this boy sat across from me at the lunch table and said ‘You’re cross- eyed,’” remembers Claire, now 9 years old and finishing up the third grade. “That’s when I first realized there was something wrong with my eyes.”

 

And while Claire may have been unaware of her Duane syndrome at first, her mother Abby recognized it almost from the beginning. Abby has a close friend who also has Duane syndrome, so she was already familiar with a few of the warning signs. When she noticed her 10-week-old daughter’s eyes weren’t as symmetrical as she thought they should be, she spoke to an ophthalmologist about early treatment.

“A doctor who specializes in Duane syndrome happens to have an office close to our home. He examined Claire and confirmed that she did in fact have it, but because she was so young he felt that treatment could wait until she was bigger,” Abby says. “So for the next few years we simply monitored her and waited to see how her eyes developed as she got older.”

But as Claire grew, her Duane syndrome became more pronounced. Then, when she was finally old enough to undergo the medical procedure that would correct her vision, Abby began to get a little nervous about potential problems that might arise post surgery.

“Because the eyes are so delicate, part of me was worried about complications from surgery,” she says. “It wasn’t until Claire came up to me and said, ‘Mom, I’m ready’ that I realized it was time. The next day we began researching eye procedures.”

With the whole family on board, their ophthalmologist recommended David Hunter, MD, PhD, to perform a superior rectus transposition surgery on Claire. Hunter’s use of adjustable sutures in the procedure appealed to Abby and Claire because it would allow him to adjust Claire’s eyes after surgery, without having to re-operate.

When the day for her surgery arrived, Claire and Abby were both a little nervous, but the staff at Children’s quickly put them at ease. “From the residents, to the nurses to Doctor Hunter himself, everyone was so invested in Claire’s case that it was a far less frightening experience than I originally imagined,” says Abby. “We were confident that Claire was going to be OK because everyone else was so confident. It was just what we needed.”

Fortunately, Claire shared her mother’s optimism. “The day of the operation I was scared, especially to get the IV in my arm, but Dr. Hunter told me everything that was going to happen,” she says. “I asked a ton of questions but he told me everything I wanted to know. I knew I could trust him to take care of me.”

Two hours later Claire woke up, with her eyes more aligned than they had ever been. Dr. Hunter performed a few tests, put Claire under anesthesia one more time to make a few minor adjustments and then sent the Kelly’s home that afternoon.

But that weekend at a Memorial Day barbecue Abby noticed her daughter’s head was turned slightly to the left, an indication that she was moving her head to see straight because her eyes weren’t fully able to move in that direction on their own. Abby called doctor Hunter to express her concern, and the doctor had Abby take a quick photograph of Claire and email the shot to him so he could see her eyes for himself. Half an hour later Abby got a call from doctor Hunter, letting her know he could adjust Claire’s sutures the following day. The next morning Abby drove Claire to Hunter’s office, and 10 minutes later Claire’s eyes were perfect.

“Dr. Hunter was able improve her eyes even more than he did after the original procedure,” Abby says. “And he did it quickly and relatively easily. It was amazing.”

Now Claire’s eyes don’t bother her at all, both in the classroom and on the lacrosse field, where she plays on her town’s intermural team. Claire says her new vision makes life much easier, but what she’s really looking forward to is acing her driver’s test in a few years.

“My new eyes will help me when I start driving because to look left with my old eyes, I used to have to turn my head past my shoulder, which was really uncomfortable,” she says. “But with my new eyes, I can actually move both eyes to the left. Now that I now have peripheral vision I know that I’m going to be a really good driver!”