Sunday, 06/09/2002
Section: Features Letter: M Page: 1 Words: 2308

Daughter's multiple organ transplants lead family to rely on faith and a mother's simple two-word prayer for her child . . .

'Heal, Kathryn'

By GAYLE WHITE/Staff

Evans, Ga. -- For months she counted floor tiles, read the Gospels and stared at her daughter.

The logo of the hospital bed became imprinted in her brain. She can still see the letters --- H-i-l-l-R-o-m.

"This is so hard," she wrote in her journal, kept in a book called "A Path to Sunshine." "I need somebody to lean on I am so lonely and homesick. I hold Kathryn and we both cry a lot."

For more than a year, Charlotte Smith lived away from the rest of her family, spending long days in Miami's Jackson Memorial Hospital. As her daughter Kathryn hovered near death, Charlotte clung to faith.

Jackson is the Grady of Miami --- long halls lined with tall lockers, stark waiting rooms furnished with molded plastic chairs.

Within this world is the intensive care unit where every breath is an achievement, often accomplished through machinery. Whirring and beeping signify endurance. Silence means death.

"She told me she was scared. I asked her of what. She said everything. It just breaks my heart."

Sometimes, Charlotte had the sense that it was all surreal.

She mentally returned to the big, brown house where Kathryn had darted in to chat about friends, boys, debate team, chorus. Kathryn was known in the family as one of the "smart ones," along with her older brother Jay.

Younger siblings Dottie and Cliff were tagged as more social.

Charlotte, an only child, was fascinated by the relationships among her children. Now, she desperately wanted to be at home surrounded by the ruckus.

"You may ask for anything in my name and I will do it (John 14:14). Heal, Kathryn."

As she sat and waited and prayed, Charlotte watched patients come in, recover, and leave. She also saw some wheeled out, completely covered.

One who died was a young man not much older than Kathryn.

Charlotte counted on God, but couldn't shut out the cold fear that Kathryn could be next.

A constant companion

If she lived long enough to undergo it, Kathryn faced a rare and very risky operation that can be performed by only a handful of surgeons in the United States.

One of them, perhaps the best, is Dr. Andreas Tzakis at Jackson Memorial.

So, Charlotte found herself in Miami.

She would be there for Kathryn whether these days marked an end or a new beginning.

She felt a kinship with mothers around the world who helplessly sit beside sick children.

"Husbands lose wives, wives lose husbands, children lose parents, it's all here," she thought. "But mothers should not lose children. We should protect them. Did we bring them into the world to suffer? It's too hard. . . ."

Trouble begins

It started with an upset stomach.

Kathryn, barely 17, was on Lakeside High School's science team.

Charlotte, a Lakeside biology teacher, was team sponsor. Kathryn's dad, Jack, a researcher with Nutra-Sweet, was also interested in science. Except for Jay, who was away at college, the whole family went along to watch a competition in Dahlonega on a fall Saturday in 1996.

Kathryn had never been a sickly child. The next day, when she didn't want to go to services at Warren Baptist Church with the rest of the family, her mother chalked the problem up to fatigue and Mexican food.

On Monday, Kathryn was still sick, but not even her mother, the worrier of the family, was taking her condition very seriously.

Until she vomited blood.

By the time Charlotte arrived home to take her to the doctor, Kathryn could hardly walk. In the waiting room, she wanted to lie on the floor and sleep.

Charlotte could tell by the somber look on the doctor's face that something serious might be wrong. The problem looked like an ulcer, he said.

In the few hours before they could meet with a gastroenterologist, Kathryn grew so weak that her father scooped her up to carry her into the examining room. The specialist performed some tests, then summoned Charlotte and Jack.

There Charlotte began to hate small conference rooms.

Kathryn had autoimmune hepatitis, probably brought on by an undetected early childhood virus, the doctor said. Her liver was slowly dying. Without a transplant, she probably could not live more than two years.

The news was bad, Charlotte thought, but not hopeless. The family could cope with a transplant.

Surgeons at Emory University Hospital in Atlanta bought time by installing a shunt to restore Kathryn's liver to about 50 percent capacity.

She returned to high school, and, as a senior, racked up awards as a National Merit Finalist and a Georgia Scholar. In the fall, she headed off to Georgia Tech.

She was almost able to forget the liver problems as she began her freshman year of college, joining Alpha Xi Delta sorority and registering for classes.

Reality intervened abruptly in the university bookstore.

It happened again. She vomited blood.

And afterward, she could barely crawl out the restroom door.

Doctors unclogged the shunt, and she returned to Tech to finish her first semester on the dean's list. But a warning had been sounded.

Medical roller coaster

By Christmas, Kathryn was tiring easily. Emory doctors put her on the transplant list and gave her a pager.

Kathryn had no pocket in the dress she wore to her sophomore sorority formal on Nov. 7, 1998, so her date slipped her pager into his coat pocket.

When it went off at the dance, about 10 friends in cocktail dresses and tuxedos followed her to Emory in a caravan.

Charlotte was surprised at how easy it all seemed. After four hours of surgery, Kathryn felt stronger. The lingering pain was normal, they were told.

But a couple of weeks later, at home with Charlotte while the rest of the family attended the Georgia-Georgia Tech football game in Athens, Kathryn began running a fever.

Doctors ordered her back to Atlanta. They wanted to do another transplant, and already had a liver.

As Charlotte and Jack waited to greet their daughter after the surgery, Charlotte's stomach knotted when she saw where she was being led. It was to one of those little rooms.

On to Miami

Sitting there beside Jack, she found the news impossible to absorb: Kathryn's intestines were dying. Doctors gave her 24 hours to live. Charlotte fled the hospital and ran onto the Emory University campus where healthy students rushed between classes. Kathryn should be like this, not lying near death, she thought. She wanted to scream.

She forced herself back to the hospital and the family took up the death watch.

Nothing happened.

An idea began to dawn.

"Do they do intestine transplants?" Charlotte asked.

The answer was yes, but at very few hospitals.

The family's insurance carrier, Aetna-US Healthcare, made the decision that Kathryn would go to Jackson Memorial.

But Jackson's transplant unit had no rooms available.

The family marked Christmas and New Year's Day at Emory, with Kathryn in intensive care.

Charlotte waved to Jack and Cliff on Jan. 2, 1999, as she took off in an ambulance plane with a respirator technician, a nurse, two pilots, and a sedated Kathryn. North Georgia was 30 degrees and sleet was falling.

For the two-hour flight, Charlotte felt suspended in time and space, looking out over nothing but clouds. Then, she stepped into Miami: 82 degrees, sunny, and seeming to move to the beat of Latin music.

At Jackson, Tzakis came to introduce himself in shorts, sandals and a University of Florida T-shirt.

"This," thought Charlotte, "is the man who will save my daughter."

"Two-fold plan: Get her stronger first and then a transplant. 'For I know the plans I have for you,' declares the Lord, 'plans to prosper you and not harm you, plans to give you hope and a future.' (Jeremiah 29:11)."

The next months rolled up and down like a Georgia mountain road --- ground gained, then lost. Family members visiting, returning home.

For Charlotte, many days were as routine as a workday: to the hospital around 9:30 a.m., leaving about midnight every night. Twice, thieves broke into her car.

"Where is the sunshine --- OUTSIDE only --- They don't have a sick child with hopes and ambitions. Their kids are well . . ."

In June, with no end in sight, she rented a condominium.

The ocean's roar and tropical view outside her window linked her to the natural world. She wondered, "How can you have heaven and hell all wrapped up together?"

In July, Kathryn became much sicker. Doctors took Charlotte into a little room and told her to tell Jack to come. At home, he was dealing with the recent death of his brother.

A decision must be made --- should "heroic means" be used to keep Kathryn alive?

A nurse who had grown close to Kathryn piped up to say, "She's young. She deserves to live."

Kathryn rallied. But she was growing sicker.

"Back in the surgical intensive care unit, with infection and fever, dialysis, bleeding, machines breathing for her. Sickness."

She could not have known as she made the notation that she was days away from a turning point.

More hope is offered

The doctor had tears in his eyes as he told Charlotte the news --- there might be a donor for Kathryn in Mississippi.

She teared up, too, understanding that a donor meant someone had died.

Plans to have Kathryn strong for the surgery had failed. By now, she was on dialysis and a respirator. She would need, in addition to the intestine and liver, a stomach, pancreas and kidneys.

In the wee hours of Aug. 25, 1999, Charlotte sat at Kathryn's bedside with Jack and Judy Schlottman, a friend from home. She felt at peace as she listened to the music from "Evita," putting the earphone to Kathryn's ear, not knowing whether she heard.

As Kathryn was wheeled away, Charlotte kissed her with a swirl of relief, concern and hope.

Kathryn was the sickest patient on whom Tzakis had ever done a multiple organ transplant. The risk was high, but without the transplant, Tzakis thought death was inevitable --- and immediate.

Charlotte asked Judy to drive her around Miami, just so she could feel that she was moving.

Meanwhile, teams of doctors, technicians and nurses --- about 40 people in all --- were methodically removing Kathryn's old organs and connecting the new ones to her blood supply and gastrointestinal track. The organs began working, bleeding slowed, and blood pressure and heart rate stabilized.

After 22 hours and 100 pints of blood, the operation was over.

When Tzakis finished the surgery, he delivered the news in the open --- no small conference room.

Kathryn had made it through.

"A power higher than me is at work here," he told Jack and Charlotte.

But the operation was but one hurdle. There were more to face.

The road ahead

There were follow-up surgeries, examinations, therapies. And, there were new life-threatening dangers --- the worst, a bowel leak so severe that Charlotte was told once again to summon Jack to Miami.

Progress was fragile. But Charlotte set out to keep up Kathryn's spirits.

Every day, she pushed Kathryn to the nursery to coo over the squirmy newborns.

To help Kathryn exercise, she made a chart of goals. A walk around the bed might earn a trip outside in a wheelchair or a smuggled hamburger.

Just before Christmas, she arrived at Kathryn's bedside with all the ingredients to make a gingerbread house. Decorating it with tiny candies was physical therapy for Kathryn's hands.

The whole family celebrated New Year's Eve in Miami. The next day, as 2000 dawned and alarmists waited to see whether the world would end, Jack, Jay, Dottie and Cliff were all on airplanes.

In May, when Kathryn was able to live at the condominium as an out-patient, every day brought an outing.

Mother and daughter caught fish in the surf --- Charlotte manipulating Kathryn's wheelchair through the sand --- then cleaned and ate them.

They visited an aquarium, where Kathryn was kissed by a whale.

When Kathryn asked for a dog, a dachshund they named Miami Maggie entered their lives.

But everything was not smooth. Charlotte learned that the school system could no longer hold open the job she loved. She sat in the little kitchen, hiding from Kathryn, and cried.

In October 2000 --- 20 months after they left for Miami --- Charlotte and Kathryn piled their belongings into a car and headed home via Disney World.

Earlier this month, they were back in Miami for Kathryn to complete what they hope is her last surgery, a minor operation to close a food tube opening.

She and her mother look back over where they've been. But mostly, they look to the future.

A shining example

Kathryn, 23, has just finished her sophomore year at Tech. She plans to become a doctor. Charlotte, who completed a year of part-time teaching, is slated to go back full time in the fall.

Both say they never gave up because they were afraid of letting each other down. Now, they are ready to get on with life.

"She doesn't want to be recognized as 'the transplant child,' " said Charlotte. "She doesn't dwell on her disease, doesn't use it as an excuse.

She believes it happened for a purpose."

"I like to say the reason it happened to me is because God knew I could handle it," says Kathryn.

She wants to promote organ donations and offer support to people going through medical crises. She realizes she can't promise everyone a successful outcome.

But she can give them something.

"You can think of me," she said, "when you think there's no hope."

Graphic Type: Photo
Caption: Georgia Tech student Kathryn Smith, who just finished her sophomore year, is on a mission to promote organ donations and offer support to people going through medical crises./ T. LEVETTE BAGWELL / Staff

Graphic Type: Photo
Caption: Keeping a journal was one way Charlotte Smith was able to deal with her daughter's worsening medical condition. As her daughter Kathryn hovered near death, Charlotte clung to faith, and kept making notations in her journal./ JONATHAN ERNST / Special

Graphic Type: Photo
Caption: As her daughter Kathryn hovered near death, Charlotte Smith clung to faith, and kept writing in her journal./ JONATHAN ERNST / Special

Graphic Type: Photo
Caption: For more than a year, Charlotte Smith (left in photo) and daughter Kathryn lived away from the rest of their family./ T. LEVETTE BAGWELL /
Staff

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