A hospital visit with Toni Bailey leaves a lasting impression

Toni, her mom, Pam, and her dad, Ron, returned home five months after I made my hospital visit.

I was working in the smallest regional bureau at the St. Petersburg Times, in Citrus County, Florida, when I wrote a story about a family hoping for a liver transplant that might save their sick little girl. When the transplant came through, I flew to Pittsburgh to cover the operation's aftermath. I wrote this story on the last night before returning home.

PITTSBURGH—To really meet Toni Bailey, you have to look past her body and into her eyes.

They are deep, heartbreak blue.

They are large and look even larger because Toni is lying in a hospital bed, naked from the waist up, and her eyes are full of questions she may never as.

And then there is her voice, a tiny glass flower of a voice.

"How are you feeling, Toni," I ask. She doesn't answer.

"Mark wants to know how you're feeling," says her mother, Pam, leaning closer.

"Fine," she lies softly, raising her eyes to mine again without moving her head.

For nine days I had written about Toni and her liver transplant without ever visiting her. Only parents and grandparents are allowed in the intensive care unit at Toni's hospital, the Children's Hospital of Pittsburgh.

But Sunday night, after dinner, Mrs. Bailey called me in my hotel room.

"Would you like to see Toni?" she said. "It's quiet, and nobody's checking anything."

Toni and I had met twice before, at the Baileys' home in Citrus County. She is 7 and shy, and she spent her time coloring in the other room while her parents and I discussed the wait for a liver transplant that could save Toni's life.

It was hard to describe Toni's appearance, even then, without sounding cruel. Her sister, Bonnie, is only 4 but looks nearly twice Toni's size.

Toni couldn't walk or event stand. Her skin was a pale green. Her head was bald because she itched incessantly, and she scratched her scalp so much that hair couldn't grow.

Little of that has changed.

Toni's new liver isn't yet doing its job. While it is improving fairly steadily, there is an urgent search on for another liver donor, so that doctors can try again.

Toni looks even smaller in her hospital bed, almost as small, it seems, as one of the pillows that supports her head.

Two electrodes stuck to patches on her chest run to a monitor at the head of the bed, and several drains and IV tubes snake over the sheets and disappear into Toni's hand and belly.

There would be enough room for a surgical team in bed with her—but Toni has chosen more congenial company. The tiny pink bunny that accompanied her into surgery is there. So are two Care Bears, a teddy bear, two dolls and another bunny.

A long blue oxygen tube runs from behind the bed to Toni's side, where it is attached to an uncomfortable green mask that covers her nose and mouth.

Toni hates that mask, which pinches her cheeks and is rubbing one of them raw. She tilts her head to the side so the mask slides to her chin.

Mrs. Bailey scolds her gently. "It's not my fault," says Toni, squirming as the mask is put back in place.

A nurse is changing the dressings on Toni's incisions, and Mrs. Bailey readies a compact mirror so Toni can see the cuts.

One runs completely across her belly. It's so big that you would think you could unhinge Toni simply to taking her by the shoulders and lifting her off the bed.

Two smaller incisions mark the spots where surgeons entered Toni's chest to control unexpected bleeding during the surgery.

All three are held closed by staples, smaller than those you would use on a term paper. The incisions look like railroad tracks with blood-red roadbeds.

Toni studies the staples in the mirror as the nurse prepares new dressings. "How'd they put them in?" Toni asks.

With a stapler, the nurse explains, and Mrs. Bailey shows Toni where her scratching has rubbed the wounds raw, even pulled some staples free.

"You can't itch there now, Toni, okay?" Mrs. Bailey says. Toni nods—and, within moments, almost absently, she starts scratching again.

"Toni," says her mother.

"It itches," Toni whines, her hand still moving, from her stomach, to her knee, to her head.

Mrs. Bailey picks up a coloring book. She selects a picture of two bunnies and starts coloring for her daughter.

She and I can't agree on the right color for the bunnies. We turn to Toni for advice, but can't quite hear what she says.

"Green?"

"Pink!" she repeats. A good choice, and Mrs. Bailey goes back to work. I stroke the side of Toni's head. She closes her eyes for a moment, her head turned toward her mother.

Soon Ron Bailey, Toni's father, returns from a waiting room to say good night.

He puts his big hand gently over the top of Toni's head, leans over the bed and tells Toni that it's time for sleep.

She nods, and they kiss three times.

Just below her father's fingertips, blood begins to flow from a scab on the back of Toni's head that she has scratched loose.

The blood runs down the side of Toni's head in two small streams, until two red dots appear on the pillow.

Remarkably enough, Toni's liver did work—until, that is, her body gave out. But she was 30 at the time, a triumph of medicine, will, and no small amount of love.

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