Read more about FES for spinal cord injury

Diagnosis:
Spina Bifida
Level of injury: L4/L5
Age at onset:
Birth

When Terri was 19 weeks pregnant, she went in for a routine ultrasound. She wasn’t worried. “When you’re pregnant, you envision your child will be perfect,” she says. But he wasn’t. The test showed that Andrew had myelomeningocele, a type of spina bifida in which the backbone and spinal canal don’t fully close before birth. Parts of Andrew’s spinal cord poked through his spine like a fluid-filled bag. The opening would ultimately cause nerve damage.
 

“When you find out something like that, it’s like you say good-bye to who you thought your child was. And then you get acquainted with who he really is,” Terri remembers.

For the final five months of her pregnancy, Terri knew Andrew would be born with difficulties—but she didn’t know the extent. “I’m an occupational therapist, so I had a good idea of what we’d be facing, but I didn’t know how much function he’d have. I didn’t know how bad it would be and what exactly we’d need to work on. It was a very hard time—not knowing.

“Once Andrew was born, we found out he could move his knees, which was a great sign. I felt like I was in a race against time to get him walking.”

As an OT, Terri spends her professional life around people with disabilities. She knew the hard road that lay ahead for her son. “I’d seen so many kids in wheelchairs have to sit on the sidelines and watch the other kids. This is a walking world. And Andrew was going to be growing up in schools made for kids who walk, with playgrounds that have grass and mulch—playgrounds that aren’t friendly for wheelchairs. I was driven to find ways to make him stronger.”

And that’s just what Terri did. She looked for every possible treatment to help her son. “Andrew’s been a guinea pig. I figured if a new therapy or technology wasn’t going to hurt him, then we were going to give it a try. My mindset is to always, always work toward independence.”

That determination has led Terri to think outside the experience of Andrew’s own doctors. “I wanted to push Andrew further than his original therapist did. That’s why we got involved in baby robotics and eventually in FES. I gave Andrew the chance to be mobile before I even knew if he’d be capable of it. It was especially important because I knew mobility affects cognitive development too.”

When Andrew was a year old, Terri heard about the use of RT300 FES at Kennedy Krieger. “I knew I had to get him there.” Terri researched the RT300 and went to see it, but Andrew was still too small to actually use it. That—of course—didn’t deter his mother.

“We did a lot of stimulation anyway of single muscle groups. We did as much as possible. We had him on the treadmill with cords attached all over. I called him Spider-Man because of all the cords—he was always a tangled web! We did our best to stimulate the contractions at the right time but it was a herculean event. It was really hard to do on my own, without his PT there.”  Terri couldn’t wait for Andrew to be big enough for the RT300 as it would stimulate his muscle groups in the proper sequence automatically.

Every quarter, Terri took Andrew to Baltimore for a two-week visit. And every visit, they’d measure his legs to see if he was long enough to use the RT300. Finally, he was ready.

“He sat in my lap and used the RT300 and we were so thrilled! He was on for 20 minutes the first time, and then each time he used it we’d keep him on for longer.”

When Andrew turned three, two hurdles were overcome: Andrew got his own RT300 and he also started using it by himself. Terri says they now average five times a week on the RT300 for 45 minutes each session. Consistency, she believes, is key. As is documenting Andrew’s improvement.

“Since there aren’t many studies yet,” she says, “I wanted to document the process by videotaping him every few weeks so we could see his progress. So before he started on the RT300 we timed him walking ten meters as a baseline. It took him five minutes to walk ten meters. And at that time he was using a walker with wheels that didn’t move—they just went straight so he didn’t even have to control his direction. He was really slow.  Recently we did another test: after four months using the RT300, Andrew dropped his time to a minute and a half! And he’s directing his walker on his own. We’re just amazed. I want to put together a case study and publish it.”

The benefits have exceeded Terri’s highest hopes. “When we were prepping for Andrew to go to preschool this September, we wrote down goals for him to aim for in the next year. When we reviewed his goals recently, we realized he’d already mastered his objectives so we had to start a new list!

“It’s amazing how fast and independent he’s become. He’s much more comfortable with transfers: he lets go with his hands when he’s transferring to different surfaces. It’s also helpful for me as his therapist, because he gets almost twice as much therapy time now. I can put him on the RT300 for 45 minutes and make sure he gets in all that good stimulation, and then I can do functional physical activities with him at another time during the day and even have time to go swimming. We don’t need that long prep time for therapy, and worrying if we’re getting the stimulation at the right moment and trying to figure out when he’s going to take the next step. That’s made a big impact on his functioning because he has so much more available time not taken up by his physical therapy time.”

Terri also believes that the RT300 is preventing atrophy in her son. “In traditional therapy, he’d be using leg bracing. I’ve tried to stay away from that because when you brace a leg or muscle you’re no longer requiring it to work. You’re feeding into the atrophy of that muscle. As an adult those braces are even bigger and heavier and you have to go back to the wheelchair for functional mobility. My philosophy has been to use minimal bracing and work on those muscles and teach Andrew to walk with his legs not his arms. He’ll have stronger legs and stronger mechanics so he won’t need the bracing as he gets bigger. I’ve had to stand up for that belief with the doctors. But they’ve been pleased with his progress. The last time we went to the doctor, he said, ‘Wow, in the last three to four months Andrew has made such huge gains.’ I said, ‘Yeah, we got an RT300.’ That hospital doesn’t have an RT300 for their kids, so Andrew’s doctor is intrigued to see how successful we are.”

So successful, in fact, that Terri’s having a hard time keeping up. “When Andrew gets on his RT300, he’ll say, ‘All right mom, now you get on the treadmill.’ But he goes for 45 minutes—that’s a long time! After the holidays when I hadn’t had any RT300 sessions for awhile, I said, ‘Mommy’s legs are tired.’ But Andrew insisted, “No, you keep going!’”

Terri has also seen improvements to Andrew’s bowel program. “We’ve had to use laxatives and stimulants and stuff—when you’re not using those muscles you get constipated. But with the physical activity it helps get things moving!

“The RT300 has made a dramatic impact on Andrew’s progress. I think it will be key to him gaining independence. Even though it seems so different from traditional therapy, it makes a lot of sense. It’s not hard to do, and I think it’s critical for muscle development and functional independence, and keeping him ready for the research breakthroughs that are around the corner.

“You know, all everyone talks about is what’s wrong with Andrew. But you have to remember there’s so much more to him than spina bifida. You have to get over that, work through it and get past it.”

Terri is making sure that happens. 

Terri Peffley, mother of Andrew Peffley

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