Susan Bailey was a happy 23-year-old wife and mother of two energetic young boys until about 18 months ago.
In July 2007, Bailey became infected with E. coli bacteria. Doctors said she might have picked it up from something she ate. She became so sick she spent two weeks in a coma. During that time, the infection spread to her legs.
With her life at stake, her husband gave doctors permission to amputate Bailey's legs above the knee. When Bailey emerged from her coma, she didn't realize at first that her legs were gone.
"My husband had to tell me several times that I didn't have any feet or ankles or knees," she said. "And that was very hard for him to tell me, and it was hard for me to hear:"
Bailey survived and slowly began the difficult road to recovery. But, along the way, she ran into an unexpected roadblock with her health insurance company, Anthem Blue Cross and Blue Shield.
Anthem agreed to pay for Bailey to get a set of prosthetic legs. But because of the unusual nature of her condition, amputation above the knees, the devices they gave her made walking difficult and painful.
"Those stubby prosthetic legs don't bend," she said. "They're straight. So I don't have a knee to bend to help me physically walk up the stairs. So physically right now ... it takes my breath away to walk."
Bailey said the prosthetic legs, called stubbies, caused her to fall down frequently. Basic tasks, such as making lunch for her kids or taking them to the school bus, became a big struggle.
Then she learned about Hanger Prosthetics and Orthotics Inc., a Bethesda, Md., company that makes legs specifically for people like Bailey, whose legs have been amputated above the knee. They are called C-Legs, because they have a built in computer chip that automatically makes adjustments to make walking easier.
Brooks Rainey, who creates prosthetics for Hanger and wears a C-Leg, said that when he met Bailey a year ago he thought she was a perfect candidate for a C-Leg.
"This is what is going to allow her to do the things that she needs to do in her everyday life, and there was really no other option in my mind," Rainey said.
But Anthem Blue Cross and Blue Shield refused to pay for the more expensive C-Legs, because they were experimental and not medically necessary. More than 25,000 C-Legs have been used by amputees.
"Sometimes a treatment will be thought of as mainstream for a particular patient population, but it will be thought of as experimental for a different population," said Susan Pisano, a spokeswoman for the insurance lobbying group America's Health Insurance Plans in Washington, D.C.
Bailey said she fought with Anthem for 10 months, filing two appeals, which the company denied.
"It was tearing me up inside that I had just been told no for something that I really, really need," she said. "To live my happy life in the same way that I was living it in June 2007."
There are nearly 2 million amputees in the United States, and most health insurance policies do a poor job of covering prosthetics for them, said Patty Rosbach of the Knoxville, Tenn.-based Amputee Coalition of America, an advocacy group that works on behalf of people who've lost limbs.