The Denver Post

Mom's devotion knows no end
Unlike Terri Schiavo, a Longmont teen's fate has never been in dispute: "She leads a happy ... life."
By George Merritt
Denver Post Staff Writer
 

Monday, April 04, 2005 -

Longmont - Her daughter weakened with infection, Linda Shepherd rushed to get her little girl to the hospital in 1996.

Severely brain-damaged since she was a toddler, 9-year- old Laura was barely hanging on. As the doctors approached, Shepherd braced for the all-too- familiar refrain: "This is probably God's way of saying it is Laura's time."

But Shepherd says she believes in the resiliency of her child.

In 1988, then-18-month-old Laura was thrown from a car during an accident. She suffered severe brain trauma and remained in a coma for a year.

More than 20 doctors and other experts pronounced Laura in a "persistent vegetative state."

Shepherd never believed them. "My daughter has a life worth living," she would say.

So, when doctors told her it was Laura's time in 1996, Shepherd strongly resisted.

"I went 'round and 'round with the doctor," Shepherd says. "I told him to do everything he could to keep her alive."

Today, Shepherd says her 18-year-old daughter laughs and cries. She asks Laura questions and says she gets answers. She drapes countless stuffed animals on the shelves of Laura's room and tacks posters on the ceiling for her to gaze at.

Laura's feeding tube, the rhythmic heave of her respirator and her constant care are just part of life.

"Laura is in a different package, but she leads a happy and loved life," Shepherd says. "If you went in and asked Laura if she wanted you to pull her plug ... she would say, 'No."'

Most doctors say people in a persistent vegetative state are not at all cognizant of their surroundings, and the chances of recovering any awareness are bleak.

The death last week of Terri Schiavo and the debate over right-to-life and right-to-death issues surrounding her family brought renewed interest in the complexities of brain damage.

Shepherd says she understands why Schiavo's parents fought so hard to keep their daughter alive and believes someone may have been able to find a way to communicate with Schiavo.

"This has huge implications for the disabled and elderly," Shepherd says of the decision to allow Schiavo to die. "People say, 'Oh, I would not want to live like that,' but you adjust. The will to live is very strong."

Since Laura's accident, Shepherd and her husband, Paul, along with constant caregivers and a few friends, have nurtured her in much the same way that a mother nurtures an infant - lots of hugs and conversation.

And that constant attention has reached Laura, Shepherd says.

Her daughter picks out her clothes when they go shopping. She names her stuffed animals. She likes some people and dislikes others.

She prefers the fire-hot flavor when she chews gum - though someone else wraps it in gauze and holds while she chews. And she is not much for sharing her candy.

"She is a teen, after all," Shepherd says.

The doting mother says she knows all this through a rudimentary communication of "yes" and "no" signals Laura makes with her tongue.

Pam Hyink - a certified speech and language pathologist - has worked with Laura to develop the communication system. She and Shepherd regularly ask Laura yes/no questions and wait for Laura to move her tongue in response.

If she sticks it out sharply, that's a "no."

Would some doctors dispute Hyink? Perhaps, but she is so convinced by what she sees that she has spent 17 years working with Laura.

And for almost two decades, Shepherd has tried to get others to see what is so very clear to her: Laura is happy.

Or sometimes, she's mad. And sometimes, she wants chocolate.

She can't articulate her thoughts like others, but Laura has feelings and a spirit, her mother says.

"Some of her doctors don't see it. She shuts off some people," Shepherd says. "And some of (Laura's) doctors see her sparkly self."

Mark Yarborough, director of the Center for Bioethics and Humanities at the University of Colorado at Denver, would not comment on specific cases, but he says families of patients with severe brain damage often read more into their loved ones' actions.

"It is pretty common that laypeople respond to activity and interpret it as response when medical professionals would describe the same activity as reflex," Yarborough says.

But Shepherd says she has always had a loving relationship with her daughter.

Doctors "treat me a lot differently these days," Shepherd says. "I think they used to think I was a naive mother in denial, but after 17 years, they see that commitment."

Yarborough says communication and functionality vary from patient to patient.

"The underlying consideration is the extent of damage to the brain," he says.

Encouraged by her success with Laura, Hyink wrote an affidavit on behalf of Schiavo's parents asking a judge to allow doctors to re-examine Schiavo.

"The only person we have not asked about (Schiavo's feeding tube) is Terri," Shepherd says.

That, of course, drives the debate across the country.

But at Laura's house, that decision was made a long time ago.

"Laura has brain damage," Shepherd says. "OK. We still love her. She doesn't have to prove anything else to me."

Staff writer George Merritt can be reached at 303-247-9948 or gmerritt@denverpost.com .

 SOURCE http://www.denverpost.com/Stories/0,1413,36~53~2797049,00.html