- Associated Press - Monday, December 22, 2014

KINGWOOD, Texas (AP) - Katy Hayes wriggled into her new myoelectric arms and let the decoration - a wooden star her kids made - dangle from her plastic fingertips.

Her first attempt to attach the star to the bare Christmas tree failed.

Her second try did, too.

Grunting and grimacing, the quadruple amputee wouldn’t give up. Finally, the gold star hung from the tree just so.

Hayes and her family are back home in Kingwood after spending 2½ years in Boston where she waited unsuccessfully for a double arm transplant.

A person can put her life on hold only for so long, said Hayes, 46. “I can’t walk on eggshells anymore. My spirit needs to move on.”

Hayes lost her limbs to a catastrophic infection following the home birth of her third child almost five years ago. She had contracted Group A Streptococcal, which was destroying her flesh and organs. Doctors removed her colon, lower bowels and uterus. Then came another medical crisis, purpura fulminans.

Hayes was in a drug-induced coma and near death when doctors told her husband the only way to save her life was to wheel her back into surgery and remove her arms and legs.

“At that moment,” Al Hayes remembered, “I would have amputated my own limbs, I would have put a bullet in my head, I would have done anything short of hurting my children to help Katy walk away.”

He told the Houston Chronicle (http://bit.ly/1wX2jad ) that he knew his wife wanted to see her children reach adulthood. He signed off on the surgeries.

When Katy Hayes got home three months later, she was almost as helpless as Arielle, her infant daughter. In time, however, she walked with prosthetic legs. She tried to make good use of plastic arms with hooks at the tips.

But the legs no longer fit as she gained back weight. The prosthetic arms were hot and heavy and made her feel as if she were trapped in a cage. Eventually, she got on the waiting list for a bilateral arm transplant at Brigham and Women’s Hospital in Boston.

The surgery is still experimental, but as Katy and Al Hayes say, there are worse things than death. In May 2012, she told reporters in Boston that she wanted to wear her wedding ring. She wanted to hug her children and husband. And she wanted to be able to wipe her own behind.

The Boston years were both sweet and sour.

Al Hayes, a musician and music teacher, struggled to juggle his work with area bands and caring for his wife and their two youngest kids. (Amber, Katy Hayes’ daughter from a previous marriage, was in college in Texas.) Early on, Katy Hayes spent hours watching ghost stories on TV; she found it hard to control the children or help her husband. Once, she came within hours of flesh-and-blood arms. Then doctors canceled the surgery. The donor limbs were a poor risk.

Katy Hayes cried then, and she cried again when a Boston man got arms after only a few months on the transplant list. She was happy for him, she said, but sorry for herself. She tired of the snow, the cramped apartments, the sirens. Every high-pitched wail reminded her that storms or car wrecks or other untold disasters might lead to “the call.”

A few months ago, the Houston couple faced their Boston doctors and acknowledged the truth. They were out of the funds raised by generous Houstonians, and they had to go home. Doctors at Brigham and Women’s said they understood, that Hayes could remain on the transplant list from Houston. The physicians will continue to search for arms for her.

“It is impossible to put a timeline on any transplant,” Dr. Simon Talbot said. “A donor must be an immunologic match, but we also consider limb size, gender, color, blood-vessel status, prior injuries” plus the routine criteria for all organ donations.

The Hayes family pulled into their Kingwood driveway last Monday night. Soon, Jake, 10, will be enrolled in elementary school and Arielle, 4, in pre-school. Al Hayes is looking for music students, and Katy Hayes is ready to resume painting.

While she was waiting for the phone to ring in Boston, she discovered that she could make art by attaching a brush to the stub of her right arm. She sold many of her paintings on the Internet, and she plans to earn more by organizing painting parties here.

She has four new prostheses, which she is working to master. With the myoelectric arms, she will be able to hold a cup of coffee, get in and out of bed and help herself in the bathroom. She has a future, she said.

“I’m in a tremendously much better situation than I was,” she said. “I’m not lying on the couch and having everyone else take care of me.”

Katy Hayes still dreams of a transplant.

The idea of touching her children’s faces or holding her husband’s hand - “those are absolutely the best things a person without arms can imagine.”

___

Information from: Houston Chronicle, http://www.houstonchronicle.com

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