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posted: 6/2/2014 5:45 AM

In pain for years, a young woman opts to amputate her club feet

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  • Phipps walks back to a van after the paddling trip. "I am setting out to defy what society thinks about what is possible," she said.

      Phipps walks back to a van after the paddling trip. "I am setting out to defy what society thinks about what is possible," she said.
    Photo for The Washington Post by Erich Schlegel

  • Lacey Phipps takes off her prosthetic feet during a break from kayaking on the San Marcos River in Texas. Born with club feet, she had them removed after surgeries left her in constant pain.

      Lacey Phipps takes off her prosthetic feet during a break from kayaking on the San Marcos River in Texas. Born with club feet, she had them removed after surgeries left her in constant pain.
    Photo for The Washington Post by Erich Schlegel

 
By Caitlin Dewey, The Washington Post

For most of her teens, Lacey Phipps couldn't get out of her wheelchair, afflicted by twisted, deformed club feet so severe that 11 surgeries failed to fix them.

She saw orthopedist after orthopedist. She downed pain pills and went under the knife for corrective surgeries that never helped.

Then, in July 2012, she made a radical decision that would scandalize her family and change her life.

"Chop them off!" Phipps said of her feet.

"I got tired of sitting in a wheelchair -- really, really tired," she says of that moment, in the slight lilt of rural Ireland where she was born. "I got tired of watching everyone else go out and not be able to do anything myself."

Now fitted with two below-the-knee prostheses, Phipps, 23, bikes to school, goes rock climbing on weekends and plays forward in the intramural soccer league at Texas Tech University, where she is a senior. She Irish dances with a local troupe and hits the gym three times a week.

Far from an anomaly, Phipps is one of what doctors and other experts say is a growing number of young, active patients who are changing the way medicine sees amputation.

Historically, doctors have sought to preserve limbs at any cost. But as prosthetics have advanced, spurred on in part by injuries incurred in the wars in Afghanistan and Iraq, and as young patients demand treatments that will allow them busier, more athletic lives, the emphasis has shifted.

Where elective amputation would have been anathema 10 or 15 years ago, it's now seen as a viable option for a range of birth defects and traumas.

"The way we look at it now is more about function," says Chris Attinger, a plastic surgeon and specialist in limb salvage at MedStar Georgetown University Hospital in Washington. "We ask the patient: What do you want to do?"

By all accounts, Phipps's case shouldn't even have gotten that far.

Clubfoot, a common, congenital birth defect that twists the feet out of position and makes it difficult to walk, affects roughly one of every 1,000 newborns. In the United States, more than 95 percent of cases are cured in infancy without surgery, using a series of plaster casts called the Ponseti Method that gradually realigns the foot.

But Phipps, who was born in a remote, Gaelic-speaking region of Ireland, endured repeated surgeries by doctors who either didn't know about the casting method or didn't believe it would work.

On one occasion, a surgeon operated on her without anesthesia, giving her a flour-filled medical glove to squeeze for the pain. On another, a doctor joked to Phipps that he'd just cut her legs off while she was knocked out -- causing Phipps, then just a small girl, to cry so hard the surgery had to be postponed.

Each failed operation only made Phipps's condition worse, further deforming her feet and forcing her, little by little, from crutches to a wheelchair, where she says she spent 99 percent of her time.

By the time she, her mother and a twin sister moved to the United States in 2006, Phipps had no bones left in her ankles. Her tibia sat directly on her heel bones, grinding together whenever she moved.

The pain was excruciating.

At age 13, Phipps began a daily dose of morphine that would make her sleep for 13 hours a night and force her to nod off in class. That was only the first in a long, ever-rotating line of medications: baclofen to relax her muscles, Lyrica to dull nerve pain, metoprolol and gabapentin to counteract the various side effects and complications she developed.

"If you (had gone) to my house, it (looked) like a dispensary," she quips, with "20 bottles (of different medicines). Bottles everywhere."

Phipps has a wry -- some would say odd -- sense of humor. She collects socks, though she has no feet. She loves inventing unlikely stories to explain her amputation: a bear attack, for instance, which "people always believe."

A short, slight girl with boyishly cut black hair and wire-frame glasses, Phipps could be an unassuming presence -- if not for her jokes and her all-neon wardrobe.

On the day we meet, at the office of her prosthetist in Northern Virginia, she's wearing blindingly pink and yellow sneakers and a matching backpack.

That somewhat contrarian spirit served Phipps well in her quest to walk again. Amputation had circled around in her mind for years, since that first insensitive doctor mentioned the possibility when she was a girl. But her grandmother said no man would marry a woman without legs, and her mother sobbed at the very thought.

Amputation isn't as simple as lopping off a leg and putting a prosthetic in its place, explains Attinger, the MedStar Georgetown surgeon.

A huge range of factors, including the length of the stub left after the surgery and the structure of its bones, affects how a prosthesis will fit. Once a patient receives one, it requires lifelong adjustment as the stub changes size and shape.

Fortunately, both amputation and prostheses have come a long way in the past 10 years.

Phipps says recent advances in the field didn't influence her decision to amputate, but there's no doubt they affected her treatment and how doctors responded to her request.

Before the wars in Afghanistan and Iraq, amputations primarily were performed on the old and infirm, frequently diabetes patients.

But the soldiers who had lost legs to roadside bombs or other injuries were young, and they wanted more from their prosthetics than traditional patients did: the ability to walk. To run. Even to ski and snowboard, as Zach Harvey, formerly the chief prosthetist at Walter Reed Army Medical Center, discovered when he moved to Breckenridge, Colo. ("We've had (prosthetic) legs fall off on the ski lift," he jokes.) At his private practice in Colorado, he counts five Paralympians among his patients.

"It's really interesting how the military pushed the limits" of prosthetic technology, Harvey said. "We were constantly pushed at Walter Reed. They (injured soldiers) just didn't want to accept any limitations."

The pushing paid off. Research and development conducted at Walter Reed, as well as at other government-funded facilities and private companies, made huge advances in prostheses: stronger socket materials that didn't become brittle or break with use; gel liners to sculpt to uneven bone; sophisticated knees and ankles loaded with microprocessors and gyroscopes to mimic the action of natural joints.

"The wars in Iraq and Afghanistan left a lot of soldiers with lost limbs," said Attinger, the Georgetown specialist. "The progress in prosthetics since then has been astounding, especially below the knee."

Many of those advances have since trickled out into the civilian marketplace, where they benefit patients such as Phipps.

Phipps had her right foot and lower right leg amputated in July 2012, then the left in mid-December of that year. Performed at a hospital in Texas, the surgeries were relatively uncomplicated and sparked no last-minute hesitation: two clean cuts, a week in the hospital (visited often by college friends) and a month in a rehab center getting used to her prostheses.

But her new legs weighed too much and fit too loosely, tripping Phipps whenever she tried to get out of her wheelchair.

Phipps had heard about a Leesburg, Va.-based prosthetist named John Hattingh, who - -- like TV's Dr. House -- specializes in difficult cases, and she got in touch with him.

On Facebook, he was promising free prostheses if a patient had run out of options elsewhere. Phipps discussed her situation with him -- the repeat surgeries, her continuing struggle to walk -- and soon she was selected for the prostheses.

In July of last year, Hattingh and his wife flew Phipps up from Texas and installed her in their guest room. Hattingh, who has made a point of donating his services throughout his career, describes it as an act of "humanitarianism."

Hattingh then went to work on crafting a device that would allow Phipps the mobility and activity level of a non-amputee. He measured Phipps' stumps, which extend just below her knees, and made a mold to fit them. He filled it with plaster in his tile-floored office workshop, where pegboards of tools lined the walls and pop music played from a digital radio.

Then he molded a test socket from clear plastic, later replacing it with a carbon frame and a silicon insert, using materials and methods that came on the market only in the past few years. The finished socket connects each of Phipps's stumps to a prosthetic lower leg, ankle and foot.

It took Phipps more than 37 days to recuperate after her amputations. But in Hattingh's clinic, she learned to walk again in three.

From there, it was only a few months until she was scrambling up a rock wall at Texas Tech. In late February, she tackled Palo Duro Canyon's most difficult trail with her twin sister and older brother, who also live in Texas. They made the 300-foot descent in just over two hours.

"I am setting out to defy what society thinks about what is possible" is how Phipps put it on her "Feet Are Overrated" adventure blog, which is filled with updates on her mountain biking and trail hiking.

"If she didn't have the determination, it never would have worked," Hattingh said. "It's a joint effort."

Phipps was back in Leesburg last December for adjustments to her prostheses. She's so active that she keeps breaking them.

Sitting in a wheelchair in Hattingh's workshop, her stumps slung nonchalantly over the edge of a work table, Phipps watches Hattingh disassemble her leg and chatters easily about the things she's excited to return to in Texas. Soccer. Irish dance. Her studies.

She plans to become a pediatric orthopedist, so she can help children like the one she once was. So she can show them, in effect, that there is hope -- even if the best solution is counterintuitive.

"Everyone is so hung up on having the perfect child," Phipps said. "All 10 toes, all 10 fingers. It's better to be without them than be in pain.

"I never missed them."

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