Limb-Lengthening Surgery Creates Controversy

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    NEWSLETTERS

    Some people with dwarfism are turning to a controversial alternative: A surgery that can make them more than a foot taller. NBC 7’s Mark Mullen shares one patient’s journey, including the criticism she has received from her own community. (Published Tuesday, Jul 29, 2014)

    Walking in Balboa Park, 20-year-old Chandler Crews, who stands just under 5 feet tall, hardly draws a second glance from passersby. And that has long been her wish.

    That is far different than might have been the case just a few years ago, when the college student born with achondroplasia, the most common form of dwarfism, was only 3 feet, 10 inches tall. It’s a time Crews associates with many challenges, among them physical ones.

    “I was having hip problems, knee problems and back problems because of how bowed my legs were. I was going to have surgery down the road anyway so I decided to lengthen my legs and arms," she said.

    This was accomplished with a series of three controversial bone-lengthening procedures using technology developed in Southern California. With such procedures, patients' bones in the arms and legs are surgically broken, then increasingly separated over a period of months; the body generates new bone to fill the gap, thus making the bones longer.

    Chandler’s mom Cathe said the operation was crucial for Chandler, who was about to start school on a large university campus she wanted to navigate like a student of average height.

    “I know she wanted to be treated differently and that she wanted to drive when she went to college. I had no idea how she was going to walk across a college campus with 14-inch legs,” her mother said.

    Chandler documented her four-year journey and rigorous healing process as she became 13 inches taller with the procedures, which can cost up to $100,000. Insurance covered costs for Chandler, as is the case for many with dwarfism, because there are medical benefits associated with limb lengthening.

    At Baltimore's Sinai Hospital, where Chandler was treated, doctors are quick to point out that while limb lengthening has cosmetic benefits, that is not the primary reason for the surgery.

    But it is that cosmetic benefit, even if indirect, that has caused controversy and even anger in the community of little people. Critics say the procedure is often used as a vanity attempt to shed the appearance of dwarfism. A petition was started asking little people advocacy groups to denounce the procedure as painful and largely cosmetic.

    Recently, at the Little People of America convention in San Diego, Rebecca Cokley and a friend wore T-shirts that read, “Short by birth, staying that way by choice." For Cokley, who has served as a national policy adviser on disabilities for the White House, it's a matter of pride.

    "I would say to you that dwarfism is beautiful. Feel pride in who you are. Disability is part of life’s infinite diversity," she said.

    Cokley also stresses that the Americans with Disability Act now mandates better access and accommodation for people with disabilities and that radical physical change isn’t necessary.

    But Chandler Crews says she is happy with her decision and not out to proselytize. She has publicized her journey to growing more than a foot taller simply to let others with dwarfism know there are options.

    "I was just tired of having my height define me," she said.

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