This series was reported by Karen Garloch based on interviews with Shoney Barrier's family, doctors, nurses, social worker, coaches and teachers.
Sunday, April 14, 1996
HE COLLAPSED DURING A BASKETBALL PRACTICE IN JANUARY, LEAVING HIS BRAIN DAMAGED AND HIS FAMILY IN AGONY
By KAREN GARLOCH, Staff Writer
Sneakers squeaked on the Concord Middle School gym floor as Orlando "Shoney" Barrier outran his seventh-grade teammates. Their first basketball game was a week away, and he wanted to impress the coach.
After sprints, Shoney waited at the end of the court, bent over, hands on his knees, panting. It was 4:15 on Jan. 23, cool-down after an hourlong practice. Coach Daren Parker chose one of the guards to shoot a free throw. If he missed, they would all run more sprints. If he made it, they'd go home.
Thump, thump, thump. The ball bounced six times and swished through the hoop. As it did, Shoney fell backward. His head hit the hard floor, sounding like a cap gun.
Rontazz Wallace thought his best friend was teasing. But when he bent down, he saw blood on the back of Shoney's head.
Coach Parker ran over and knelt down.
"Orlando, can you hear me?"
Shoney moaned and moved his arms. Parker felt for a pulse in his neck. It was so fast and erratic he couldn't count it.
"Go get coach Doby!"
Doug Doby, a football and wrestling coach, ran to Shoney's side. Other coaches hustled the team outside the gym. This wasn't something the kids should see.
Doby held his ear to Shoney's mouth and nose so he could feel Shoney's breaths against his face. He put his head to Shoney's heart. It was beating so fast Doby thought it would jump right out of his chest. Shoney groaned.
"Just calm down. Everything's gonna be fine, " Doby assured him.
In minutes, Cabarrus County paramedics arrived. Doby ran to the door to tell them to hurry. Athletic director Jeff Rodgers was there.
"I think he quit breathing, Jeff!" Doby said.
Medics shocked Shoney twice with defibrillating paddles, sending electricity over his heart. They had to hurry. If they didn't get his heart pumping again, his brain wouldn't get the oxygen it needed.
The defib worked. They got a pulse. They lifted him onto a stretcher and raced to Cabarrus Memorial Hospital, two miles away.
Shoney was a coach's dream - 6 feet tall, 150 pounds and an honor roll student. His best sport was football - he was a fearless linebacker and running back on the seventh grade's undefeated team. But coach Parker eyed him for basketball. Shoney had big hands and he was coordinated. At only 13, he could dunk the ball.
Relatives thought he was shy, but when Shoney was among friends, he loved to clown around. One day he posed in front of health class with arms outstretched, pretending to be a uterus and fallopian tubes.
But when Dr. Marty Scott met Shoney at Presbyterian Hospital's pediatric intensive care unit in Charlotte, he was unconscious and barely responsive.
His brain lost oxygen
Doctors soon discovered why Shoney collapsed: He suffered from hypertrophic cardiomyopathy - a rare, often inherited disorder that causes an abnormal thickening of the heart. Four other Carolinas boys, ages 9 to 16, died in recent months. All collapsed while playing basketball; all were apparently victims of undetected heart problems.
Shoney's heart was beating so rapidly when he collapsed that no blood was making it out. His brain lost oxygen for five or 10 minutes, maybe longer. Even one minute without oxygen causes brain damage. The next few days would tell how much.
At Presbyterian, Shoney lay motionless on an air mattress in a computerized bed that moved him slowly and continuously so his skin wouldn't develop sores. Every few hours, the bed vibrated to loosen secretions in his lungs.
Three tubes sprouted from his nose. A thin white one dripped food - formula - into his small intestine. A clear tube drained his stomach. A thick blue tube connected his trachea to a ventilator.
Without the blue tube, Shoney would suffocate. He didn't have a gag reflex so he couldn't keep his throat clear of saliva and mucus. Nurses suctioned secretions every hour or so by sliding a catheter down the blue tube in his trachea.
Dr. Carolyn Hart, a children's brain specialist, checked Shoney every morning.
She lifted his eyelids and shone a light into his eyes. His pupils constricted, showing he had some function in his brain stem, the base of the brain responsible for reflexes.
Dr. Hart called his name. He didn't respond. She asked him to open his eyes. They remained closed. She squeezed his fingertips and toes and rubbed his breastbone, looking for a response to pain. At first, he didn't move. After a few days, he stiffened his arms and legs. It was just a reflex.
Two days after he arrived, he grimaced when nurses pulled a piece of tape from his face. That was the highest level of brain function Dr. Hart saw.
Because his brain was swelling, Dr. Scott and Dr. Hart - Shoney's main doctors - thought Shoney might be on his way to brain death. That's a legal term describing someone with no brain function, not even reflexes, and no ability to breathe.
But the swelling stopped. Shoney continued to take breaths. His pupils continued to constrict. His brain didn't die.
He stayed in a never-never land, barely living, but not dead.
I know you can hear me'
In the first days, dozens of relatives, teachers and friends came to visit, spilling out of the waiting room and huddling in the halls. Shoney's cousin, Tara Barrier, who was like an older sister, came every night after work and read aloud to him from his many "Get Well" cards.
Shoney's mother, Paula Jordan, stayed close. She rubbed his arm and kissed his hand. Usually, Shoney appeared to sleep. But when the nurses suctioned him, he opened his eyes, turned his head and moved his lips, as if he was chewing. Sometimes he coughed.
Paula took these movements as a sign that he was improving. She spoke to him as if he could hear her. She said only positive things.
"Hey, Orlando. It's Mama. I lo-ove you. I know you can hear me."
Nurses taped a 15-foot-long banner, covered with "Get Well" wishes from Concord Middle School students and teachers, across one wall of Shoney's room. They taped his football team photo to the door, surrounded by greeting cards, some homemade.
"Don't ever give up if you want to score high in life, " one said.
"I love you, Shoney, " said one from his sister, Quimera.
Several gold pins were fastened to the neckline of Shoney's blue hospital gown - one was a star, one was an angel, one said "Expect A Miracle."
Monday, April 15, 1996
THE CHOICES: CLING TO LIFE, OR LET HIM DIESECOND OF FOUR PARTS
By KAREN GARLOCH, Staff Writer
Dr. Marty Scott has been taking care of critically ill children for 10 years. It is his specialty and he loves it. He loves seeing kids get well and go home.
That wasn't happening for Orlando "Shoney" Barrier. He'd been in Presbyterian Hospital for seven days and showed little improvement.
He might go home. But he wasn't going to get well. And it was Dr. Scott's job to tell his family.
He wanted everyone to hear the same information at the same time. They'd meet on Wednesday, Jan. 31, at 8 a.m. He would lay out the options and allow time for them to sink in.
When Dr. Scott arrived, Shoney's mother, Paula Jordan, and nine of her relatives - brother, sister, cousins, aunts, uncles - were waiting in the long, quiet hospital conference room.
This family had always been close. Paula grew up in a three-bedroom house in Concord with her grandfather, her mother, her brother and sister, three cousins and an aunt.
She dropped out of school at 17 to give birth to Shoney. For the past two years, Shoney lived with his great-aunt, Doris Jean Barrier, and her daughter, Tara, in the house where Paula was reared. In recent years, Paula hadn't always been there for Shoney. She moved a lot and kept erratic hours. But in recent months, she felt she was getting her life together. Then this happened.
Presbyterian social worker Cynthia Davis put a box of tissues in the middle of the table. Dr. Scott and two other doctors sat down.
The room fell quiet. Dr. Craig Greene, the heart specialist, explained that Shoney has hypertrophic cardiomyopathy. It's a rare, often inherited disorder that usually goes undetected until the victim dies suddenly. But Shoney didn't die.
Since he'd come to Presbyterian, Shoney's heart had worked normally. He was getting enough oxygen and wasn't depending totally on the ventilator to breathe.
Dr. Carolyn Hart, a children's neurologist, spoke next about Shoney's brain.
She chose neurology as her specialty because the brain is where you live. It is responsible for feelings, memories and personality. To her, telling Shoney's family that he had lost that spirit was the same as telling them he had died. It was going to be hard.
First, she asked, is he called Orlando or Shoney? She had heard both names. Family members nodded at the nickname.
He'd gotten it as a baby because he was so big - nine pounds, 13 ounces. His uncle Darryl Barrier called him Shoney, after the restaurant chain's Big Boy mascot. As a teen-ager, he grew to 6 feet. He could eat a plate full of fried chicken and in a couple of hours ask for more.
Dr. Hart and all his other doctors and nurses came to call him Shoney, too, just like his friends.
Your brain can only survive for a minute or so without oxygen, Dr. Hart explained. Shoney's brain lost oxygen for longer than that, long enough to cause injury.
In her exams, Dr. Hart said she looked for two things: brain function and brain-stem function.
The brain stem, at the base of the brain, gives people reflexes, such as swallowing and blinking and breathing. The upper brain enables people to make purposeful movements, to be aware and to think.
Shoney had some brain-stem reflexes, but Dr. Hart didn't see any evidence of brain function.
"The one thing that might be a brain function is that he'll grimace a little bit. I stuck a Q-Tip in his nostril and he turned away from it. . . . Maybe he felt that and didn't like it."
Darryl, whose hands were folded under his chin, spread them to cover his nose and mouth. He stared at the wall.
A vegetative state
"His exam is bad, " Dr. Hart said. "We call what he's in right now, the neurologic term is, a vegetative state."
At those words, Paula, usually stoic or upbeat, brought her hands to her face, covering her nose and mouth.
"If it lasts a month, then we call it a persistent vegetative state."
Dr. Hart's words hung in the air like that morning's fog.
For Paula, time stopped. She hadn't heard these words before. She wasn't ready.
She kept thinking of Shoney the way he was. So generous and sensitive and loving. Shoney's father had never been part of his life. It was Paula, only 5 foot 1, who had played football with Shoney and his buddies.
When Shoney and her two younger children came home from school, she always expected them to "give me my propers" - a kiss, a hug and an "I love you." Once he reached adolescence, Shoney was too cool for affection in public. "Oh, mom. Not in front of my friends, " but Paula would make him do it anyway.
Dr. Scott looked around. He was impressed by the number of relatives who'd come to the hospital early on a weekday. He'd never had a patient with so many visitors for so many days. He'd never known Shoney, but from all he could tell, he was a really good kid.
Dr. Scott knew what he'd want if he were Shoney. His living will said he didn't want to be kept alive if he couldn't eat, or walk or think. Other people might disagree, but no choice was right or wrong, Dr. Scott thought. The choices were all tough.
As legal guardian, Paula had to make a decision in the next few weeks. Shoney couldn't stay in the intensive care unit forever.
The first option
Dr. Scott gave the family three options:
Shoney could have surgery and live for years in a vegetative state. He could live in a nursing home or he could live at home.
He would get a tracheostomy, "trach, " for short. Surgeons would cut a hole in his windpipe and insert a tube. With a trach, Shoney could be weaned off the ventilator and breathe on his own. Family members would have to suction the tube and keep it clear of secretions.
Paula put her hand to her face, fighting off tears.
Surgeons would also put a gastrostomy tube into Shoney's stomach. He would be fed through the tube with a formula, like high-powered milkshakes.
"That's a difficult task, " Dr. Scott said, "and nobody would fault you if you said, We can't do this. We're gonna have to find someplace else to put Orlando.' "
Paula closed her eyes.
Fierce faith in God
Dr. Scott gave the second option.
After some time, if everyone agreed that Shoney wasn't going to improve, the family could take him off the ventilator, and "whatever happens, happens."
Saliva would probably clog his windpipe and he would suffocate.
"He would die, " Dr. Scott said.
Tears ran from the corners of Paula's eyes.
Darryl shook his head and stared.
"If I'm ever in this situation, my family knows what I want, " Dr. Scott said. "With children, you never think about this because this isn't supposed to happen to kids. It's left up to people that love him the most to try and decide what Orlando would want."
Even though Dr. Scott believed Shoney would never wake up, he recognized Paula's fierce faith in God.
"The third thing that could happen, " he said, "is that a miracle could happen and Orlando could suddenly get well."
Dr. Scott had seen it before. He had told parents their children were going to die and those same children visit him every year. But those children didn't lose oxygen like Shoney. "In this situation, where there's been such a degree of brain damage, I've never seen a miracle occur."
Paula wanted to scream.
"Excuse me. I have to go to the bathroom."
Cynthia, the social worker, followed Paula into a room around the corner and offered her a pillow to scream into. Paula refused. She had grown close to Cynthia over the last few days. Sometimes Cynthia was the only person she would open up to. But Paula would not break down. She refused to appear weak.
"In the name of Jesus, give me strength, " she prayed. "Make Orlando whole. Let me know that it's gonna be all right."
In a few minutes Paula returned to the meeting. Dr. Scott was still talking.
"It's been my experience that parents make decisions because they love their children, and every parent makes the right decision. I don't know what I would do. A lot of people may come up and tell you, If this were my son, if this were me, I know what I'd do.' It's real easy when you're not in a situation to have these opinions. I think if it were my daughter, I don't know what I would do. I don't think anybody knows."
Later, at Shoney's bedside, Tara Barrier stood beside her cousin - so much like a brother - taking in all she had heard. Tears rolled off her cheeks, dropping in tiny puddles on Shoney's arm.
In the hall, Darryl shook his head.
"I just can't believe this is happening." Last week, they were talking about who they liked to win the Super Bowl. And this week, "he's almost on his death bed."
"If it was me I wouldn't just want to sit around. I don't think he'd like to be so helpless."
Sometimes you can't win
Dr. Scott sat in the dark in his small office. He shuffled papers on his desk, then leaned back in his chair and crossed his arms. His eyes were red, but he didn't cry.
This really sucks. Such a decent kid, only 13, working to make good grades, with so many people who love him. And something horrible happens.
He stared at the wall and recalled what his mentor told him years ago after a small child died.
"Sometimes the disease beats you."
We've done everything we can for Shoney, Dr. Scott told himself. But life's not always fair.
"Sometimes the disease beats you, " he kept telling himself.
Paula had left the conference room before everyone else. She needed to be alone. She fell to her knees in a vacant patient room and folded her hands.
"Show me a miracle, " she prayed. "Right now I'm fallin' a little short on faith but I still believe, Lord. I just need a sign because I'm gettin' weak right now. In the name of Jesus, please strengthen me."
Tuesday, April 16, 1996
SHONEY SEEMS TO IMPROVE
By KAREN GARLOCH, Staff Writer
Paula Jordan got her sign from God.
Ten days after her son, Shoney, collapsed, a second brain-wave test showed very slight improvement.
"Improvement" was the only word Paula heard. She had prayed for it and here it was.
On Shoney's first EEG (a test that measures brain activity), his brain waves were "low and slow, " neurologist Carolyn Hart told Paula. On the second test, they were "less low and less slow" because the swelling in his brain had gone down.
"I want to make sure that you understand that this doesn't mean he's coming out of it, " Dr. Hart said. "This is still a clearly abnormal EEG."
"OK. OK, " Paula said, walking away.
She'd heard all she wanted to hear. She practically ran down the halls, spreading her good news to anyone she saw.
By this time, Orlando "Shoney" Barrier had been in Presbyterian Hospital for almost two weeks. She'd been there with him, and she'd made lots of friends. In the waiting room. In the coffee shop. In the outdoor smoking area. People all over the building recognized the small, spunky woman who roamed the halls at all hours. Many stopped to ask about her son.
The hospital had become her home. She slept a few hours at a time in vacant patient rooms. She lost all routine, except cigarette breaks. She smoked three packs of Newports a day.
Paula's prayers are answered
The EEG lifted her spirits for the first time in days. Relatives drove down from Concord, despite a predicted ice storm, and she couldn't wait to tell them.
"Didja hear the news?" Paula asked her brother, Darryl Barrier, when he walked in the waiting room. "The neurologist came in and said he had more brain function than they thought."
"That's good news. . . . That made my day, " he said, lifting his Orlando Magic ball cap.
"Our prayers been answered, " Paula said. "Thank you, Jesus."
The Barriers filled two rows in the waiting room. Their spirits were up. They laughed and joked.
Presbyterian social worker Cynthia Davis posted a new sign on Shoney's door, just in case he could hear what was going on around him:
"Remember to speak positively in front of Shoney."
Paula wants Shoney home
If Paula took Shoney home, she'd need to know how to care for him. Over the next days, she helped give Shoney baths, change his diapers, move his arms and legs for physical therapy. She put on his basketball shoes, size 12, black and white Converse high tops. His shoes had to be changed, two hours on, two hours off, to keep the tendons in his ankles from shortening.
A few days later, Paula heard that Tennessee police officer Gary Dockery had awakened from a coma-like state after 7-1/2 years. It was another reason to believe in miracles. She could never decide to let her son die if there was a chance he might someday wake up.
Dr. Marty Scott, Shoney's intensive care specialist, thought Dockery's story gave Paula false hope. He tried to explain the differences. Dockery didn't lose oxygen to his brain the way Shoney did. He was never in a vegetative state.
Paula didn't want to hear it.
She told Dr. Scott she had made her choice. She wanted to go ahead with surgery - a tracheostomy to keep Shoney's airway clear and a gastrostomy tube so he could be fed. She wanted to take him home. But she wanted everything to wait until after Saturday, Feb. 17 - his 14th birthday.
Cynthia has a talk with Paula
As days wore on, Cynthia, whose job was to give support to Paula, began to have doubts.
Paula wasn't taking her insulin for diabetes. Even when her blood sugar level skyrocketed dangerously, Paula didn't seem to worry. She caught a ride to Kannapolis one day for a doctor's appointment, then skipped it. Nurses paged her but she didn't answer. A few relatives and coaches told Cynthia and the nurses that Paula shouldn't be relied on to care for Shoney at home. He had lived for the past two years with his great-aunt, Doris Jean Barrier, and her daughter, Tara.
As a social worker, Cynthia counseled lots of families with sick children. She'd seen relatives argue and couples split up over the tension and grief. She knew that people cope in their own way.
That's why she supported Paula's decision to take Shoney home. That's why she understood when Paula didn't always act the way others expected her to.
They had a long talk. Cynthia helped Paula confront reality. If you want to take Shoney home, Cynthia said, you'll need stable housing, a telephone, transportation, money to pay higher electric bills. Even if you do everything right, Shoney might still die.
Paula cried. She retreated to Shoney's dark room, just the two of them, for a long time.
"I'm feeling pretty bad now, babe, " Paula said. "Can I get a kiss?"
She lowered the bed rail and leaned in. She sighed and laid her head against his face.
"I lo-ove you. Keep on fighting."
Shoney's eyes opened really wide. This had happened off and on for several days. Instead of seeming sleepy, he appeared alert, and his eyes stared directly at Paula.
They were big and brown and beautiful. Paula could not look into them without believing he was looking back.
I am NOT God'
It had been a month, time enough to conclude that Shoney's vegetative state was permanent, when the staff called another meeting. They would go over the choices one more time to make sure Paula understood the implications of her decision.
This time, instead of being surrounded by family, Paula came alone. Shoney's relatives continued to visit regularly, but Paula had withdrawn from them. They didn't think Paula was capable of taking care of Shoney, so she didn't want anything to do with them. She told Cynthia not to give them any information about Shoney's condition.
Dr. Scott reminded Paula of her options. With surgery, Shoney could live a long time in a vegetative state. He could live with Paula or in a nursing home. Or Dr. Scott could turn off the ventilator and take out the feeding tube, and Shoney would die.
Even with surgery, Shoney wouldn't be the boy she knew, Dr. Scott said.
"Would he ever talk? Would he ever walk across the room? Would he ever play basketball? Would he ever open Christmas presents? Would he ever laugh at jokes? Would he ever watch MTV? I don't see any of those things happening, " Dr. Scott told her.
Paula clenched her fist and held it over her mouth. She was tired of this hospital and tired of bad news.
"It's not being in denial, " Paula said. "It's just that he's fightin'. He's fightin'. And I CANNOT give up on him as long as he's fightin'. I can't do it. 'Cause I am NOT God. If God wants Orlando, he'll see fit to take him. You know what I mean? He'll find a way to do it nice and peaceful. He will. I don't want no part of it."
Once Shoney gets the trach and feeding tube, Dr. Scott said, "there really is no turning back."
"I know this, " Paula said. "I've still got to suction or I'll be committing murder. I KNOW this."
Her voice grew louder.
"What I'm saying is: Orlando, he wants to live. I believe that. I just can't do it. I can't do it. He wants to live, and I just can't terminate his life. I cannot do it."
Paula's chest heaved with a huge sigh. She closed her eyes and sighed again. She fingered a pack of Newports.
"Can I step outside for a cigarette?"
Dr. Scott nearly cried. This was more time than he'd spent with Paula for many days. He could hear the pain in her voice and see it in her eyes. She still believed Shoney was going to get better, but Dr. Scott knew he wouldn't. Before she left the room, he repeated his belief that, in situations like this, parents always make the right decision for their children. There is no right or wrong.
Medicaid won't cover it all
Paula would need a lot of help to care for Shoney at home.
She had stopped working after Shoney collapsed. Her only income was several hundred dollars a month in Aid to Families with Dependent Children and food stamps. She didn't have a car or a phone. Her rented house in Kannapolis didn't always have heat.
Shoney's medical care would be expensive. He had been in intensive care for four weeks, and it cost about $1,145 a day. Home health nurses would cost $290 for eight hours. Medicaid would cover much of that, but it wouldn't pay for diapers and formula. It wouldn't pay for the telephone she'd need or the higher electric bills because of Shoney's monitors.
Cynthia asked Medicaid for 24-hour home nursing care. But she knew they'd be lucky to get 16 hours a day.
Even though Paula didn't want it, Cynthia also began inquiring about nursing homes, but none had room for Shoney.
Paula spent the next few days working with the nurses, trying to prove to them she could take care of Shoney.
On Sunday, Feb. 25, she left the hospital to go to church. She didn't return for three days. On Wednesday, Feb. 28, she visited for a few minutes, and left again.
Shoney's surgery was scheduled for Friday morning, March 1. But Paula hadn't signed the consent papers. They couldn't insert the trach without her signature.
Cynthia tried the beeper several times, but Paula didn't answer. Relatives didn't know where she was either.
Cynthia knew what she had to do. She didn't want to, but it was time. She called the Cabarrus County Department of Social Services.
"I need to make a referral for possible child neglect."
Wednesday, April 17, 1996
STRUGGLING TO COPE
By KAREN GARLOCH, Staff Writer
Paula Jordan showed up at Presbyterian Hospital the night before Shoney's surgery.
She'd been gone for most of five days, with no explanation. She seemed surprised when social worker Cynthia Davis asked where she'd been.
"I knew he was in good hands, " Paula said. "I needed to get away. I just needed time to think to myself."
Orlando "Shoney" Barrier had been unconscious for more than five weeks, since he collapsed on the Concord Middle School basketball court Jan. 23. Paula had stayed with her son in the Charlotte hospital most of that time. After his surgery, she knew she would be more responsible for his care. She said she took her last chance to tie up loose ends. She forgot the beeper.
"I was worried about you, " Cynthia said. "I didn't know where you were. . . . So I called the Department of Social Services."
"Oh, boy, " said Paula, staring at Cynthia as if her best friend had turned traitor.
"So, what's the bottom line? Everything's on hold?"
Cynthia said DSS wanted to delay the surgery for a week. But Dr. Marty Scott said he'd rather not. Shoney had developed a sinus infection because of the tubes in his nose. They needed to come out or other problems could arise.
"If you're gonna make the same decision one week from today, then let's do the surgery, " Dr. Scott said.
Shoney went to surgery Friday morning, March 1. Paula and a roomful of relatives gathered to wait.
When he came out, free of tubes in his nose, he looked more like himself than he had for five weeks. You could see his whole face now, a young, handsome face. You could imagine him laughing and teasing. He opened his big brown eyes and they moved, seeming to search the room. Then they stopped and stared.
People moved around and talked to him, but he didn't respond. Doctors said he didn't see or hear.
With the trach tube in his throat, Shoney could now live a long time. Someday Paula might change her mind and decide that he'd be better off dead. By law, the trach and feeding tube could be removed at any time. But for now, Shoney would lie in a bed or sit in a chair, dependent on someone else to move him, give him a bath or feed him through a tube.
Five weeks had passed since he collapsed, but as far as Shoney knew, it could have been five minutes. Or five years.
Valentine hearts hung from the ceiling of Presbyterian Hospital's pediatrics floor when Shoney arrived in late January. By the time he had surgery, St. Patrick's Day shamrocks decorated the halls.
Shoney's buddies on the Concord Middle School basketball team finished their season with nine wins and two losses. All season, they wore yellow ribbons on their uniforms, signs they hoped Shoney would return. After every game, they huddled in the locker room, arms around shoulders, and prayed silently for their teammate.
The Super Bowl that Shoney had looked forward to with his uncle, Darryl Barrier, was long past. The NCAA basketball tournament loomed. Shoney's cousin, Tara Barrier, was five weeks closer to finishing her degree at UNC Charlotte and getting married June 1.
Life went on.
Shoney's new home
Four days after surgery, Shoney was moved from intensive care to a much bigger room on the children's floor. Paula missed the move. She had visited once since the surgery.
DSS got temporary custody of Shoney. Paula changed her mind, and agreed to have Shoney placed in a nursing home. Cynthia worried that her search for a home could take months. Until then, Shoney would live in the hospital, at a cost of $374 a day.
Paula told her DSS social worker that she didn't want to give up custody. She wanted to be involved in Shoney's life. But she had stopped visiting except for a short time on Easter.
Shoney's other relatives visited almost every day, after work or school. They didn't agree with Paula's decisions for Shoney, but they were there for him.
"I wouldn't have prolonged him this way, " Darryl said. "I love him, but I never would have had him go through what he's going through."
Tara and Darryl and other relatives were frustrated by their powerlessness. They were angry that Paula could make decisions for Shoney and then just not show up.
"It's unfair to him. It's unfair to the family, " Darryl said. "I feel like closer family members should have some say."
Last week, almost three months after Shoney collapsed, Cynthia found a nursing home in Asheville that would take him. Tara and Darryl and other relatives were there to watch him ride away in an ambulance last Thursday. It's so far away, they won't be able to visit as often.
The best she could do
In the days before Shoney left the hospital, Dr. Marty Scott stopped by his room several times a week. It was usually during the day, and Shoney was almost always alone. "It breaks my heart, " Dr. Scott said.
But that didn't mean he thought Paula had made the wrong decision by keeping Shoney alive.
Twenty years ago, a family wouldn't have had her choices. Medical technology now makes it possible to keep people alive. Any of us could one day face the complicated, heart-wrenching decision to shut off a ventilator - or keep it on indefinitely.
"There's not a wrong decision, " Dr. Scott said. "There's only right decisions for every family. It's not a true-or-false test.
"The important thing is that people have choices. The role of medicine and physicians and nurses is to be an educator and supporter and an ally. It's not medicine's role to make the final decision.
"If they had chosen to come to me and say, We've known Shoney for 13 years and we all love him and we know that he wouldn't want to be like this for another day, ' I would have made sure that everybody was in agreement . . . and I would have gone into his room and stopped his feeding, pulled his tubes out, turned off the ventilator and turned off his monitors and left him with the family. If they thought he was in pain, I would have given him narcotics. And he would have died.
"I could have been fine with that decision."
When Paula said she couldn't terminate Shoney's life, Dr. Scott understood that too. It's the family that must cope with the grief and the choice. He always supported a parent's decision. And he did now.
Paula Jordan did the best she could, Dr. Scott thought. It's all anyone can do.
Monday, April 15, 1996
WHEN DO YOU END A LIFE?A LIVING WILL CAN HELP LOVED ONES DECIDE
By KAREN GARLOCH, Staff Writer
Patrick Price doesn't have any doubt he made the right decision to let his 87-year-old mother die.
Two years ago, after Clarice Price had her second stroke, doctors at Presbyterian Hospital agreed she would not get well, and her son asked them to withdraw intravenous fluids that were keeping her alive.
He knew she wouldn't have wanted to live that way. She had told him. And she had a living will.
One of Clarice Price's three sons objected to withdrawing IVs, but that living will gave the other two sons comfort. "It made it a nondecision, " said Patrick Price of Asheville. "I knew exactly. This is what she wanted."
Most decisions at the end of life are not so easy.
Many people know what they would want if they become terminally ill and can't speak for themselves. But they're often reluctant to talk about those wishes or write them down. End-of-life complications can be avoided by signing a living will and appointing someone you trust to make decisions for you when you're no longer able.
"We think that medicine can do everything, and we're not really willing to admit to our own mortality, " said Anna Moretti, a staff attorney for Choice in Dying, a New York-based, nonprofit group.
"People really don't want to think about this. It's often not thought about until it becomes a crisis situation."
According to a Gallup survey, only 20 percent of Americans have signed living wills, legal documents that outline wishes about medical treatment if they become unable to speak for themselves.
Unlike regular wills, living wills do not deal with splitting up property. They go into effect only when a person can't communicate for himself. Living wills don't necessarily rule out aggressive medical treatment; they could instruct doctors to take heroic measures to prolong life.
Grief can sway decisions
Even the clearest living will can be ignored if a doctor who doesn't know the patient or a relative who's not ready to let go insists on life-prolonging treatment. If there is no living will and families have never talked about death, decisions are left up to relatives who may be overcome by grief or guilt.
"People need to talk with their families about what's important to them, " Moretti said. "A physician would much rather talk to a family member who has some sense of what you were thinking when you wrote the words down. That makes them feel more confident."
When the patient is a child, who's never considered death, much less a living will, the decision is up to the parents. That's the case with Orlando "Shoney" Barrier, a Concord 13-year-old who fell into a persistent vegetative state after a heart problem caused him to collapse on the basketball court in January.
When given the choice to continue treatment and keep him alive or withdraw treatment and let him die, Shoney's mother asked the doctors to perform surgery - a tracheostomy to keep his airway clear - and install a feeding tube.
In North or South Carolina, it would have been legal to remove the ventilator, stop his liquid nutrition and let him die.
"If a patient is terminal and incurable or in a persistent vegetative state, then it is specifically recognized as proper to stop treatment, " said Lance Stell, Carolinas Medical Center ethicist and Davidson College philosophy professor.
Get a precise diagnosis
Before deciding to withhold or withdraw treatment from anyone with brain damage, Dr. James Pugh, a Charlotte neurologist, said families should make sure they have an accurate diagnosis. Terms, such as vegetative state, coma and brain death are often used interchangeably and sloppily. But they are very precise (see list of definitions, this page), and the diagnosis makes a difference in what doctors can legally and ethically recommend.
News reports about Gary Dockery, the 42-year-old Tennessee police officer who recently started talking after a brain injury 7-1/2 years ago, used conflicting terms when describing his recovery.
He was originally described as comatose, but some experts say he was probably in a "locked-in" state. Such patients are conscious and thinking but can't move, except to maybe blink their eyes.
It is rare for people in Dockery's condition to regain speech after so many years. But doctors can't always give families a certain prognosis.
"When people hear that it's not absolutely certain, then they're in this terrible bind, " Stell said. "The burden of deciding to stop treatment with the awareness that this will result in death is very, very horrifying."
Patients in a persistent vegetative state, like Shoney Barrier, appear to sleep and wake. Their eyes are often open and they may have other reflexes. But they don't interact and they aren't aware of their surroundings.
"It's disconcerting, " Stell said. "The notion of awake but unaware sounds like an oxymoron."
Patient's age plays role
As in most states, N.C. and S.C. law makes no distinction between withholding or withdrawing treatment. Families of patients in a persistent vegetative state could stop "anything and everything at anytime, " Stell said.
But doctors say families have a harder time withdrawing treatment once it's begun.
"Those are just more difficult decisions for families to make, " said Dr. Marty Scott, Shoney's doctor at Presbyterian Hospital. "Maybe it's easier to do that when it's your grandmother, who's had a long and full life. I've never seen a family that could do that with a child."
Both Carolinas Medical Center and Presbyterian have ethics committees, made up of doctors, nurses, chaplains and others, available to consult when doctors and families need help making end-of-life treatment decisions.
The value of documenting end-of-life wishes before a crisis was demonstrated in a highly publicized court case involving Nancy Cruzan of Missouri. A 1983 car accident left her in a persistent vegetative state, and her parents wanted to remove the life-sustaining feeding tube.
After a three-year battle, the U.S. Supreme Court upheld the Missouri Supreme Court decision to allow removal of the tube after testimony that Cruzan had said she would never want to live "like a vegetable." One reason the battle took so long was that Cruzan left behind insufficiently clear evidence of her wishes.
Permitted by law
Most states, including North and South Carolina, have passed laws permitting people to make living wills. In 1991, federal law also required every hospital and nursing home receiving Medicare or Medicaid money to advise all patients about their state laws on living wills.
North Carolina's Natural Death Act allows people to declare their wishes that physicians withhold or withdraw "extraordinary means" if they are terminally and incurably ill or in a persistent vegetative state.
It is legal to ask in advance that intravenous food or water be withheld or withdrawn when people become unable to speak for themselves.
N.C. law also gives people the right to sign a health-care power of attorney, naming a trusted relative or friend to make medical decisions for them if they become incompetent.
South Carolina's Death with Dignity Act also provides for living wills and health-care powers of attorney.
It allows people to declare their wishes to withhold or withdraw life support if they have a terminal condition or are in a state of permanent unconsciousness. The law sets specific waiting periods, after the doctor diagnoses a terminal illness or permanent unconsciousness, before the documents can take effect. In South Carolina, living wills will not be enforced if a patient is pregnant.
Preparing these documents is easy and inexpensive and does not require a lawyer. N.C. and S.C. laws suggest specific forms that call for two witnesses and a notary public's seal. But physicians often accept documents from other states or even handwritten letters.
The advantage of using a state-approved form is that it gives immunity to a doctor who follows it in good faith. But a legal living will can take many forms.
"You can videotape it. You can put it in a song. You can do it any way you want, " Stell said.
For example, Clarice Price's living will was typed on plain white paper and witnessed by two friends. It was as helpful to her sons and her doctors as if it had been drawn up by a lawyer.
Here is part of what she wrote:
"If there is no very good expectation of my making an excellent recovery from physical or mental disability, I, Clarice Walters Price, demand that I be allowed to die and not be kept alive by artificial means or heroic measures.
"Death is as much a reality as birth, growth, maturity, and old age - it is the one certainty. I do not fear death, but do dread the indignity of deterioration, dependence, and hopeless pain."
For more information
* Choice in Dying, a New York nonprofit group, operates a 24-hour, toll-free number that offers information and counseling about living wills. It can provide state-specific documents. Call 1-800-989-9455. On the Internet, Choice in Dying's Web site address is http://www.choices.org.
Thursday, January 23, 1997
DAYS PASS UNNOTICED, UNCHANGING FOR SHONEY
By KAREN GARLOCH, Staff Writer
Orlando "Shoney" Barrier doesn't know it's been a year since he collapsed during seventh-grade basketball practice.
He now lives at Hillside Street Health Care in Asheville, where he sits in his wheelchair during the day, never speaking, never moving except to cough or yawn.
His eyes are open when he's awake and closed when he sleeps, but he doesn't respond to questions or commands. A tube in his throat helps him breathe. He is fed through a tube into his stomach.
"We actually don't know what's going through that mind, " said Susie Woody, one of his nurses. "We don't know how much he understands.
"It's sad, " she said. "I just about cried when he came in."
Shoney, who'll turn 15 in February, arrived at Hillside in April, after three months at Presbyterian Hospital. He collapsed a year ago today because his heart - secretly harboring a rare disorder called hypertrophic cardiomyopathy - stopped pumping oxygen to his brain. He lost consciousness and lapsed into a persistent vegetative state.
A four-part Observer series in April described Shoney's plight, the predictions by doctors that he would never regain consciousness and his mother's decision not to let him die.
The series "touched a lot of people's hearts, " said Cynthia Davis, the social worker who guided Shoney's family through difficult decisions about his medical care. "We really had an overwhelming response."
The hospital and the family received dozens of letters and donations, many from students shocked that such a thing could happen to someone so young.
"A prisoner from Kentucky sent us a letter with $5 and said it was all he had, " Davis said. Most of the $6,333 raised by the Presbyterian Hospital Foundation will be used to buy a special wheelchair to make Shoney more comfortable.
Davis, who has left Presbyterian, stays in touch with the family and the nursing home employees who take care of Shoney.
Here's where they are, a year later:
This week, Shoney has a bacterial infection in his throat, and must stay in his room until the infection clears.
When he's not sick, nurses get him out of bed and roll him in his wheelchair to the lobby with the other residents, ages 4 to 22. A teacher and activity director show movies or play with them.
Only one of the residents can walk, and none of them talk. But Hillside employees speak to them as if they understand.
"Hey, Shoney, " Woody said one morning this week. "I'm going to do your trach."
Then, she cleaned the tube in his throat, a tracheostomy. She does this at least once during her shift, sometimes more often.
Shoney's relatives from Concord visit as often as they can. Once, a group drove to Asheville in a van they rented with donations collected by the hospital foundation.
"We try to go at least every month or every other month or so, " said Shoney's uncle, Darryl Barrier. "We don't get to see him as often as we would like."
Barrier said he's happy with Shoney's care and doesn't foresee any changes. "He's had no major problems. Just here and there infections. . . . He's not doing any better, but he's not doing any worse."
Medicaid, the government health plan for the poor, covers most of the cost of Shoney's care. He was in intensive care for four weeks at a cost of about $1,145 a day. The nursing home costs about $100 a day.
Last summer, a Rowan County juvenile court judge transferred custody of Shoney from his mother, Paula Jordan, to Barrier. In June, Jordan began serving a three-year prison sentence. She was convicted of assault with a deadly weapon with intent to inflict injury.
Shoney's classmates at Concord Middle School dedicated the 1996 yearbook to him, and during last year's seventh-grade basketball season, his teammates remembered him by wearing yellow ribbons on their uniforms and by keeping his No. 7 jersey draped over an empty chair.
In the fall, they honored him still. Many of those same friends, who played eighth-grade football, kept Shoney's football jersey on their bench.
Principal Tish Harris learned about it during one halftime when referees pushed the jersey aside to sit for a break.
"One of the kids yelled, Make that guy get off Orlando's jersey, ' " Harris said. "In their own ways, the kids that were closest to him are noting his absence . . . . We all think about it."
Dr. Marty Scott, the pediatric intensive care specialist who was Shoney's main doctor, hasn't seen Shoney but thinks of him often.
Early this month, Scott's 6-week-old daughter was hospitalized with an infected tear duct, and he saw the hospital from another perspective.
"You can certainly see how difficult it is for parents to have a child in the hospital, " Scott said. "What's nice about being the physician in charge is that you have more control of how things are going. When you're the parent or the patient, you don't have that control."
During the year, Scott has had to advise other families of children who, like Shoney, came to the hospital with brain damage.
"I still approach those things in the same fashion, " he said. "I still believe that parents make the right decisions. (I believe in) giving them as much information that I have available to me (and) being respectful once they've made their decisions."
Amid those sad cases, Scott said, there's usually at least one child a year who gets well despite the odds. "Not that it can make up for bad outcomes, " Scott said, "but emotionally it sort of counterbalances the kids that you couldn't do anything for, like Shoney. If you get one big save like that each year, you're on top of the world."
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