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Girl Thriving After Heart-Kidney Transplant

Posted on: Thursday, 4 May 2006, 06:01 CDT

MILWAUKEE _ Shortly before her 12th birthday, Quenesha Blackburn had to accept the hard truth that to get the kidney and heart she needed to live, another child would have to die. And soon.

The quiet girl, known to friends and family as Q, the girl with the soft brown eyes who loved to run and jump rope, had been told by her doctor that she might have only months to live. Scared and crying, Quenesha wondered what would happen to her.

"You're not going to die," her mother, Sonia Brewer, insisted. "You're going to fight for your life."

Deep inside, though, Brewer was scared, too. She knew she could lose the oldest of her five children. And the only thing that could save Quenesha, the thing Brewer prayed for, would devastate another mother.

In heart transplants, size matters. Quenesha would need a heart similar in size to her own, probably from a child close to her age.

"The clock is ticking and you don't know each day that goes by, is (the transplant) going to happen? Is it going to happen?" Brewer said. "And then another thing is that I didn't want to be greedy like that, because someone has to die for her to have life."

Quenesha was placed on the waiting list for a heart and kidney in early December 2004.

On Feb. 24, 2005, around 4 p.m. the phone rang at home.

"I've got good news and bad news," the doctor told Quenesha's mother on the phone. "Which do you want first?"

Heart-kidney transplants for children are exceedingly rare. Quenesha's was one of just 19 in the United States since 1988, according to the United Network for Organ Sharing, the Richmond, Va.-based nonprofit that administers the nation's system for procuring and transplanting organs.

Few tasks in health care are as difficult as asking the parents of a deceased child to consider organ donation. Last year, more than 7,000 people died and donated organs, 901 were children up to age 18. The donations were insufficient to meet the need.

In 2005, 204 children died waiting for an organ transplant. Quenesha was spared because somewhere in Wisconsin another child died.

Quenesha's journey to the organ waiting list began with a visit to Children's Hospital of Wisconsin in August 2002. Her feet, legs and back were swelling badly. Doctors determined that it was kidney failure. She had a disease called glomerulonephritis, in which the kidney's filters become inflamed or scarred, hindering their ability to remove waste and water from the blood to make urine.

By August 2003, Quenesha was coming to the hospital three days a week for three-hour sessions of dialysis.

But doctors had discovered an additional problem.

Quenesha had a dilated cardiomyopathy, a disease in which the heart muscle becomes weak and doesn't pump blood effectively. Doctors hoped medication would help her heart stabilize or even improve.

"At that point, we were kind of unsure where her heart condition was going," said Shelley Chapman, a nurse and the kidney transplant coordinator for Children's Hospital.

There was a chance she would need only a kidney transplant, and if that were the case, no child would have to die to give Quenesha life.

Chapman had begun discussing possible living donors for the kidney.

Already, Quenesha was showing the strain of her kidney problem. Brewer noticed that her daughter was growing more tired and moody. She didn't want to play with other children. She had to give up chocolate.

And she wasn't getting better. Her kidneys went from working at 50 percent to 75 percent of normal to working at 10 percent to 20 percent.

She carried a backpack of medication that dripped through an IV tube into her chest to help her heart pump. And yet, slowly, her heart grew worse, too.

"And then the talk became that she would need both the heart and the kidney," Chapman said.

Quenesha's name went on the waiting list. The question was whether her new heart and kidney would arrive before the old ones gave out.

Would another child die, and most important, would the grieving parents offer their child's organs to save someone else?

In a hospital, when a patient dies or death is imminent, health care workers notify the local organ procurement organization, which in Milwaukee is the Wisconsin Donor Network.

The network determines whether the deceased meets the criteria to be a potential donor. Almost always, the donor must be brain dead so that machines can sustain the organs. If the deceased qualifies, the network sends staff to the hospital to talk to family members about organ donation. If the family approves, staff must determine what organs, if any, can be recovered.

Then a computer system run by United Network for Organ Sharing goes through the national waiting list for organs and spits out the names of possible recipients ranked according to various criteria. Throughout the process, very little is revealed about the person who has died.

So when the phone rang on Feb. 24, a doctor told Brewer the good news: We have a donor for your daughter.

Then the bad news: We need Quenesha here as soon as possible.

"Oh Lord Jesus, I'll never forget that," Brewer recalled.

Only later would she learn that her daughter's new heart and kidney had come from a teenage girl who died of a head injury.

A double transplant demands meticulous planning, and time is precious. The doctors and transplant coordinators caring for Quenesha had met in advance to discuss the sequence of events.

The heart surgery would come first. Hearts must be transplanted within four to six hours of being removed from the donor; a kidney can be transplanted up to 36 hours after removal.

After the heart transplant, doctors would check for good blood flow from the new heart to the rest of the body before starting the kidney surgery.

Chapman, the kidney transplant coordinator, was traveling when her pager went off with the news that a heart and kidney had become available for Quenesha. The girl was already on her way to the hospital.

Chapman flew back to Milwaukee and began making phone calls to get the kidney to Children's. It was the start of a nerve-rattling 18 hours of calls and worry. Even back home that night, she could not sleep.

At the hospital, Quenesha's family waited about two hours for the heart surgery to begin.

As Quenesha was wheeled to surgery, Brewer said she loved her and that everyone would be praying for her.

"When you wake up," the mother said, "it will all be over, and you'll have a new life."

All of a sudden, the elevator doors opened near Brewer, and she saw a red cooler, and she knew right away that inside was her daughter's new heart.

Quenesha went to the operating room shortly before 9 p.m. She was placed on a heart-lung machine that allowed her to bypass her old heart and still circulate blood to the rest of the body.

The heart surgery took about eight hours, including a few minutes to cut out the old heart and about 60 to 90 minutes to implant the new heart. Once the new heart was sewn in, doctors removed a clamp, allowing blood to flow into the coronary arteries.

Outside, Brewer read the newspaper, paced and prayed. Every few hours, a doctor or nurse would emerge with updates.

She's doing fine. Her pulse rate's fine.

The heart is being sewn in. She's coming off of the heart-lung machine.

The heart portion of the transplant was finished by 5 a.m.

"It really couldn't have gone smoother," said Stuart Berger, medical director of cardiology at Children's and a professor of pediatrics at the Medical College of Wisconsin.

An hour passed, as doctors waited to make sure Quenesha's new heart was functioning well before proceeding to the kidney transplant. They checked her blood pressure. They took an echocardiogram to check the heart chambers. They were beginning to pump vigorously.

Meanwhile, Quenesha's new kidney sat on ice in a cooler.

The organ, about the size of her closed fist, looked pale.

They had reached a moment that revealed the complexity and risk of the double transplant.

Because her heart function wasn't completely normal yet, doctors were using drugs to support the heart. But those cause the blood vessels leading to the kidney to constrict, thereby decreasing blood flow to the organ. Doctors would have to balance to the needs of both organs.

Christopher P. Johnson, solid organ transplant surgeon for Froedtert Memorial Lutheran and Children's hospitals, has performed more than 500 kidney transplants, many involving the transplant of a second organ, often a pancreas.

But in 20 years of transplanting kidneys, he had never worked on a kidney-heart transplant for a child.

Before beginning the transplant, Johnson performed a 20-minute surgery on the kidney itself, tying off blood vessels, trimming fat from the organ, checking the condition of the ureter, the duct that carries urine from the kidney to the bladder.

Satisfied that all was as it should be, Johnson began the transplant. As he worked, the surgeon could not see Quenesha's face. Her body was draped in blue sheets, all except for her abdomen.

Even so, the girl looked beautiful to the surgeon; her anatomy looked pristine. Older patients often show signs of scarring and disease.

After two hours, Quenesha had her new kidney, and the doctors restored blood flow to it. Johnson watched the kidney's color go from pale to pink, just as it should.

Shortly before noon on Feb. 25, Quenesha left the operating room. She awoke and heard voices, but when she looked around, she could not see who was talking. She tried to pull the feeding tube out of her mouth.

When Brewer visited her daughter, a white towel was over the girl's chest; it rose and fell, rose and fell. She could see the new heart beating.

In the year since her surgery, Quenesha has started to run again, proud of her sprinter's speed. She can eat chocolate again.

Her energy tank seems perpetually full. And at Oliver Wendell Holmes Elementary School, she made the honor roll.

Her post-transplant regimen includes 19 pills a day; she never forgets to take them.

"She was the Q I knew again," Brewer said.

In other respects, her daughter has changed. She has become more outspoken, even mouthy, her mother said. Quenesha has also taken to sneaking portions of lasagna to her room.

Sometimes, at night, she has dreams of having different organs inside her.

"I wonder if she got the person's personality," Brewer said, chuckling. "That's what I want to know."

Or maybe it was just turning 13.

Brewer has thought about the child who died, the girl she knows so little about. She's thought about the parents, too, how they must have suffered, and how they spared her from the same suffering.

"I felt bad for the person who did lose their child," she said. "And the thing about it is, I thank them. I never met them, but I thank them. They were so good to do that."

They gave her the most powerful reason of all to sign the anatomical gift statement on the back of her driver's license.

"It can save people's lives," she said. "I wasn't an organ donor. But I am now."

___

BY THE NUMBERS

7,000: Number of people in 2005 who died and donated organs

901: Number of donors who were children up to age 18

204: Number of children who died waiting for an organ transplant in 2005

___

(c) 2006, Milwaukee Journal Sentinel.

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Source: The Milwaukee Journal Sentinel

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