Twice a year, Anni Lierhaus wished she was sick enough to stay home from school. Not coincidentally, those were the same days she and other elementary, middle and high school students throughout the country took the Presidential Physical Fitness Test, a now-retired national challenge intended to evaluate kids’ fitness and motivate them to stay active.
Lierhaus didn’t mind running a mile or touching her toes during the sit and reach, but her success in those measures wouldn’t outweigh her shortcoming in one area. Born with brachial plexus birth palsy, an injury affecting her left shoulder, arm and hand, Lierhaus could not do a pullup.
“It was a struggle … not being able to function the same as other kids, not looking like other kids,” says Lierhaus, now a 27-year-old consultant in Boston.
[See: 10 of the Biggest Health Threats Facing Your Kids This School Year.]
But today, Lierhaus’ outlook is much different. While she still can’t do a pullup, she has played basketball, tennis and college soccer. Today, she attends fitness classes at high-intensity studios like Barry’s Bootcamp and teaches spinning classes for students of her own.
“I don’t let my arm hold me back, and there are ways you can compensate and figure out a different alternative or way to go about doing something you love,” Lierhaus says. “It’s not [debilitating] unless you make it.”
Still, Lierhaus emphasizes that her strides since childhood are largely due to the care she received at Boston Children’s Hospital’s international referral center for brachial birth palsy, a world leader in treating and studying the condition. U.S. News ranks the hospital No. 1 for orthopedics (among other specialties) in its latest Best Children’s Hospitals rankings.
“If I hadn’t had [my medical team],” says Lierhaus, who was inspired to study medicine before becoming a consultant, “my life would have been much different.”
What Is Brachial Birth Palsy?
Brachial birth palsy describes an injury sustained during childbirth that damages the brachial plexus, a network of nerves that runs through the neck, shoulder, arm and hand. About one to four out of 1,000 newborns have the condition, which often corresponds with a complicated or emergency birth, says Dr. Peter Waters, Boston Children’s orthopedic surgeon-in-chief who directs the brachial plexus program.
“The usual situation unfortunately starts when the parents have a child whose arm is not moving normally,” he says. “For them, it’s a dramatic change from their expectation.” While the condition is more common among bigger babies, babies whose moms have diabetes and babies whose older siblings have brachial birth palsy, “it’s not as predictable as people would want it to be,” Waters says. “That’s the unfortunate thing.”
The fortunate thing is that, when treated skillfully, children with brachial birth palsy can grow up to live full, productive lives. Some begin to heal on their own within the first few weeks of life; others gain function with physical therapy alone.
“Every time they come in … we’ll perform an exam but put a rehab perspective on it, provide education and home exercises based off a child’s clinical evaluation.” says Susan Morehouse, a physical therapist at Boston Children’s who works with babies and children with brachial plexus injuries.
About half of children with the condition, including Lierhaus and others who wind up at Boston Children’s due to their injury’s severity, benefit from surgeries on nerves, muscles, tendons, bones and joints in addition to physical therapy. “There have been some really remarkable changes [in treatments],” Waters says.
[See: 10 Ways to Prepare for Surgery.]
One of the most recent advances, for example, allows surgeons to transfer a working nerve from one part of the body to the injured nerve in the brachial plexus. The procedure is especially promising because unlike nerve grafting — which involves sewing a working nerve into a damaged one — nerve transfers can be performed in developing countries without advanced anesthesia or a lengthy recovery, Waters says.
Lierhaus underwent two surgeries in elementary school, including a bone and joint surgery in fourth grade that for the first time allowed her to use her arm to wash her hair and button her pants. But committing to a physical therapy regimen until fifth grade was just as critical in developing her current function. “I did not want to go to physical therapy,” says Lierhaus, whose mom is a physical therapist, “[but] that is my biggest recommendation: Stick with it.”
Living With BP
When families first visit Morehouse, they want reassurance that their kids will turn out OK. Based on what she’s seen in her 10-plus years of practice, she can give it.
“It’s been a fascinating diagnosis and patient population to work with,” says Morehouse, who first quells new parents’ fears about how to dress, hold, put down and otherwise care for their babies safely, and then teaches them exercises to help strengthen their babies’ muscles. “I’m starting to see more kids that I had seen as infants and young children, and now they’re in adulthood … they’re headed off to college and doing these amazing things.” One former Boston Children’s patient, for instance, served as captain of her high school gymnastics team; another hikes, swims and rock climbs.
To get there, though, families’ love and support is critical, says Waters, who finds that parents benefit from support groups, while their kids can benefit from camps and other programs for children with similar injuries. “If your kid is emotionally healthy,” he says, “then the physical part, no matter where it ends up, they’re going to be fine.”
Lierhaus is a case in point. While her arm doesn’t look or function exactly like most other people’s (“When I run, my arm sticks out like a chicken wing,” she says), her daily limitations have less to do with physical activity than fashion. She avoids off-the-shoulder and spaghetti-strap shirts, for instance, since one of her shoulders is more sloped than the other. “You get fancy and find little tricks to carry yourself and hide it,” she says.
[See: 10 Lessons From Empowered Patients.]
Indeed, a knack for problem solving and sense of confidence are among the qualities Lierhaus and others have gained from the condition, Morehouse finds. “Some of these kids have taught me some strategies that they’ve learned … that I’ve been able to teach other kids who come through the clinic,” like how to put their hair up in a ponytail, she says.
Lierhaus’s advice? “Don’t not try something because you don’t think you can do it,” she tells other people with similar injuries. “It’s owning it and getting an attitude: This is what it is, and I’m going to work with what I got.”
More from U.S. News
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The Honor Roll of Best Children’s Hospitals 2017-18
Growing Up With Brachial Plexus Birth Palsy originally appeared on usnews.com
