Aug
10
Saving Isaiah
Filed Under features, projects, social services |
This story - originally published in The Palm Beach Post on Sunday, Aug. 10, 2003 - started as a simple feature about a troubled family. But when the mother began to hear disturbing reports about her son’s treatment in a local psychiatric hospital, I realized I had a much more complicated story. I worked my sources, pulled oversight reports, consulted mental health experts, sought out workers at the hospital and finally got the medical files that confirmed his mother’s fears.
STORY LINK
Main story: Saving Isaiah
RECOGNITION FOR ‘SAVING ISAIAH’
Winner, single story, Casey Medals for Meritorious Journalism
By KATHLEEN CHAPMAN
Palm Beach Post Staff Writer
The state of Florida locked away Isaiah White 11 months ago.
They confined him in a place they call the “quiet room.”
They held him down and injected him with powerful drugs.
They forced him into full-body restraints as he wriggled on the floor.
He was 6 years old.
While living at Sandy Pines hospital in Tequesta last fall, Isaiah lost his first baby tooth.
He practiced adding small numbers and played CandyLand. He waited for Santa.
When he was bad, staffers confiscated his toys and upped his dose of antipsychotic medications, most of which have not been tested for use in children.
Officials at the state Department of Children and Families, who help run the state’s mental health programs, say psychiatrists are cautious when prescribing drugs. They say they want children to live with families, not in psychiatric wards. They say they do not want to institutionalize any child.
But for nearly a year, Isaiah has lived in facilities for the state’s most disturbed children and teenagers.
In December, three months after the state committed Isaiah to Sandy Pines, a DCF inspector came to look at 11 bruises on his arms and legs.
“Some are from playing outside,” he said, “and some are from being taken down.”
In March, Sandy Pines officials acknowledged they had not helped the boy. DCF transferred him to a psychiatric group home in Broward County, where he remains. He celebrated his seventh birthday last month.
The state has billed Medicaid more than $100,000 for his treatment.
Child advocates are alarmed by Isaiah’s case. Why, they ask, did the state treat a frightened first-grader like a psychotic adult? Is there no better way to discipline a 75-pound child?
“There is something seriously wrong with our mental health system,” said Gerard Glynn, executive director of Florida’s Children First, a coalition that represents children in state custody. “It is appalling. . . . I cannot understand, in a civilized society, locking up a 6-year-old child. Period.”
Confidentiality laws prohibit DCF from talking about Isaiah. But officials say they commit children to locked psychiatric programs only to ensure their safety when all else fails.
“I personally don’t like to see any child in a residential treatment center,” said Sue Ross, chief of children’s mental health for DCF. “But children under the age of 10 are of higher concern to me.”
The Palm Beach Post pieced together Isaiah’s story through police, school, DCF and hospital monitoring reports, DCF records, public court hearings, interviews with his medical doctor, former principal and family members, and hundreds of pages of records from Sandy Pines hospital.
Sandy Pines officials refused several requests for interviews.
17 SURGERIES IN FIRST FOUR YEARS
Isaiah was born in Atlanta, 7 pounds, 11 ounces, with a full head of dark hair.
Nurses hovered in the seconds after his birth, waiting for his first cry. It didn’t come. His lungs couldn’t fill. Nurses whisked him into intensive care.
The infant lay motionless in a plastic bubble, tubes up his nose and machines whirring beside him. He was too fragile to hold, but nurses pulled a chair into the ICU so his mother, Cheryll White, could watch over him.
Weeks later, doctors took Isaiah off life support. But he often wheezed and turned blue. Doctors found that his airway was small and floppy, threatening to collapse and strangle him.
Months later, surgeons sliced into his esophagus and inserted a tube. Later, they cut out a rib and transplanted it into his neck to strengthen his airway.
Nurses often had to stab him again and again with an IV, looking for a vein as he twisted and squirmed. Isaiah panicked when he saw the needles, clenching his whole body against the injections, Cheryll said.
Sometimes, he jerked out his arms and reached for help, like he was falling.
His sister Ashley, then 12, wiped the tears from his face, while his mother held him down.
Doctors often had to pin his arms with heavy wings they called “welcome splints” and “happy sleeves” to keep him from ripping out the small tubes.
When nurses couldn’t get the IV in his arm, they stuck it in his forehead.
One day, doctors left him in a crib with his arms pinned to his body and a needle in his head. When his mother came to check on him, he was rubbing his head against the bars of the crib, trying to pull out the IV.
By the time Isaiah was a toddler, he recognized the green sign marking the exit from Atlanta’s I-285 to the hospital. When he saw it, the 2-year-old lunged against the restraints of his car seat, trying to escape.
Isaiah never learned to speak through the equipment strapped to his neck. When he tried to scream, the only sound was a gurgle and the empty rush of air through the tube.
Cheryll said she tried to soothe her son. She sat by his side. She towed him around the hospital in a red wagon.
And she gave him whatever he wanted.
“If he wanted to eat 10 Popsicles, we gave him 10 Popsicles,” she said.
During his first four years, Isaiah checked into the hospital more than 40 times and underwent 17 surgeries. His mother guesses he spent three-quarters of his days in the hospital.
Despite his single mother’s best efforts, he became increasingly violent, said LeRoy Graham, an Atlanta respiratory specialist who treated Isaiah during those four years. Isaiah punched his nurses. He lunged at Graham.
Though extreme, Isaiah’s behavior was not unusual, Graham said.
Hospitals, no matter how cheery, can be terrifying for the youngest patients. The children try to defend themselves, Graham said.
Isaiah believed the doctors deliberately tortured him, while his mother watched.
His tracheotomy tube was removed when he was 3 1/2, and Isaiah almost never talked about the hospital after that, Cheryll said.
But one day, when he was 5, he turned to her, and hissed: “They slit my throat open from one side to the other. And you let it happen.”
OUTRAGE AT FAMILY, CLASSMATES
When the family moved from Atlanta to Palm Beach County in the summer of 2000, Isaiah’s medical problems were mostly over.
But he was increasingly savage. He charged at relatives with scissors and threw a glass jar on his older sister Kaitlyn’s bare feet. He held his 4-year-old cousin under water until he was blue and gasping. At dinner, he picked up a knife and threatened to cut out his mother’s heart.
In kindergarten at West Riviera Elementary, Isaiah could rarely stay in class for more than two hours, said former Principal Sharon Hench. Discipline slips show he bit other children until their arms were swollen, dived off desks onto his classmates and kicked his teacher.
Seven times, school officials and family members sent him to mental health crisis units under the state’s Baker Act. Once he arrived angry and sweating, after fighting with police.
On an admission in January 2002, crisis unit doctors asked Isaiah to sign an acknowledgement of his treatment plan. He couldn’t read much of it, but at 5, he could write a little.
In shaky, halting print, above the line labeled “client signature,” the kindergartner spelled out his first name.
COMMITTED TO MENTAL WARD AT 6
Psychiatrists diagnosed Isaiah with post-traumatic stress disorder, a mental problem first studied in Vietnam veterans. He had night terrors and trouble sleeping. He flinched when a cashier at a water park asked him to wear a plastic bracelet to show he had paid. It triggered his memory of a hospital ID band.
Cheryll believes her son also has reactive attachment disorder, a problem in which early traumas prevent children from bonding normally with their parents. She wanted to take her son to one of the national centers that train parents to help severely disturbed children.
Nearly every day, Cheryll hounded DCF officials for the money. When she felt administrators were patronizing her, her temper came quick, like a sudden slap.
The state wouldn’t pay for the special treatment, but it did provide a psychiatrist, an after-school program and a therapist who came to the home to work with Isaiah nearly every day. In the summer after his kindergarten year, the state paid his tuition to a summer camp for emotionally disturbed children.
Cheryll couldn’t control her son, so she settled for containment. She took him to the drive-in movies instead of the theater so other families wouldn’t be bothered if he started to howl. She placated him with whatever he demanded: candy, Happy Meals, a singing Barney doll from Toys “R” Us. As the summer of 2002 wore on, Cheryll lost her job as a program director for the homeless. She was hospitalized with pneumonia. She grew increasingly brittle.
Isaiah spent his sixth birthday first at the mental health crisis ward at Columbia Hospital - and in the arcade at Chuck E. Cheese’s.
Days later, Isaiah went into a rage and crashed into a window, shattering the glass and splitting open his arm. Doctors had to use heavy sedatives to calm him enough to stitch him up.
They worried the sedative would affect Isaiah’s breathing and asked Cheryll to monitor him closely.
And so, Cheryll said, six years after the tense night of his birth, she again sat by her son, watching his lungs rise and fall. She was furious there was no money to pay for attachment therapy or the inpatient psychiatric program she thought he needed.
Frantic and sobbing, she called the abuse hot line and blamed the state of Florida for neglecting her son. Without more help, she didn’t know what she would do. She said she was afraid she would hurt him.
DCF sent a caseworker the next day. The state took custody of Isaiah and arranged for him to go to a therapeutic foster home. Caseworkers said they took the boy because he no longer could safely stay at home. In their plan, they reported “Special conditions - due to specific medical and behavioral needs, allegations of medical neglect. The mother’s inability to care for specific needs.”
Six weeks later, on Sept. 11, 2002, with the approval of two doctors, the state committed Isaiah to Sandy Pines.
Sandy Pines psychiatrist Neil Merkatz diagnosed the boy with post-traumatic stress disorder “due to multiple hospitalizations.”
If Merkatz had doubts about committing a 6-year-old to Sandy Pines, he didn’t mention them in his admission papers. His recommendation for the boy was three to six months in the hospital.
Soon, the boy who was terrified of needles was held down for injections of psychotropic drugs. The child who associated restraints with painful surgeries was zipped into a full-body “safety coat.”
And the boy with an already weak bond to his mother lived with strangers, waiting for her weekend visits.
NOTED BEHAVIOR EVERY 30 MINUTES
The Sandy Pines staff members measured Isaiah’s behavior in 30-minute increments. They gave him points for small accomplishments, such as brushing his teeth and cleaning his room. When he acted out, staffers took his toys and sent him to his room to eat dinner alone.
He went to a special school inside the hospital and attended individual, group and family therapy sessions. In the beginning, staffers hoped the strict, structured behavior program would help.
“We need to remind ourselves that Isaiah is only 6 yrs. old and in a class with much older children,” his therapist wrote in a Nov. 11 progress report. “Considering the circumstances, he’s showing improvement.”
But they still could not stop his rages. He flew down the hallway screaming. He attacked staff members.
One night in the winter, as older patients screamed and fought in the background, Isaiah talked to his mother on the phone. He practiced adding small numbers and recited her two most important rules:
“Don’t hurt self and don’t hurt others.”
‘WE TOLD HIM THAT IT WOULD HELP’
Sometimes, staff members said they had no other way to control the 4-foot-3 boy besides the safety coats.
Sandy Pines officials would not answer questions about the coats. But the common model is canvas and lined with felt. Staff members pull the children to the ground, then roll them into bags that zip from toe to neck. Straps are tightened around the body, pinning the children’s arms to their torsos.
One day, after Isaiah was in the coat, psychiatrists interviewed him about his feelings.
They asked whether he knew why he had been restrained. He didn’t.
They asked whether the restraint helped him gain control of himself. He said no.
They asked whether he felt safe in the coat. No.
His sister Ashley, now 19, went to see him most weekends and was outraged about his treatment.
“We told him that it would help him, that it was a good place,” she said. “But all of a sudden, he’s in straitjackets, getting injections, abandoned by his family. What’s he supposed to think, at 6 years old? I think it hurt him. A lot.”
Isaiah did not seem to understand what was happening to him. He didn’t know why he couldn’t go home. Most days, he refused to participate in therapy.
Therapists wrote that he didn’t seem “vested” in the goals of the program.
On Dec. 23, staffers recorded in his progress notes that the boy was “overly stimulated” and had trouble focusing on his treatment.
He was too excited about Santa coming, they wrote.
PERMANENT SIDE EFFECTS POSSIBLE
The Sandy Pines psychiatrist tranquilized Isaiah with a variety of drugs, gradually increasing the doses.
The doctor started him on the antipsychotic medication Zyprexa, then switched to Geodon, replaced that with Abilify, and then added Clonidine, a drug used to lower blood pressure.
When he was especially wild, they sedated him with Haldol, a powerful drug originally developed for schizophrenic adults.
The boy’s records don’t always specify whether psychiatrists gave him Haldol by mouth or by syringe. But in some cases, documents show that the drugs were administered “IM” - an abbreviation for intramuscular injection.
Cheryll said she didn’t want her son to get the injections. But when she declined to sign the permission forms, officials threatened to send Isaiah home, she said.
She signed.
At least 13 times in the month of January, Isaiah was sedated with emergency doses of Haldol or the sedative Vistaril, according to his file.
In one case, his file noted that the boy was “lethargic” after an injection and slept through the afternoon.
Doctors’ opinions around the country vary on whether antipsychotic drugs should be given to young children. Some say that, in rare cases, even 6-year-olds can be so dangerous that it would be malpractice not to prescribe the drugs. Other doctors recoil, believing problems with the powerful medications outweigh the benefits.
Though anecdotal evidence shows that the medications can sedate children, the effects and risks on developing brains are largely unknown. Many have not been tested in children and are not yet approved by the government. Their labels carry the blanket caveat: Safety and effectiveness in children have not been established.
But one side effect of Haldol and some other antipsychotic drugs is clear: The longer patients take them, and the higher the dose, the more likely they will develop repetitive tics in their bodies and faces.
Patients may grimace, stick out their tongues, smack their lips and flutter their eyes. Some twitch in their arms, legs and body.
The damage is often irreversible.
FROM ‘DEFIANT’ TO ‘EXTREMELY DEFIANT’
By late fall, Cheryll was unsettled about what was going on inside Sandy Pines and feeling guilt that she initially pushed for her son’s placement there. She called repeatedly to challenge their use of restraints and injections.
“He’s scared of needles,” she told them.
On Jan. 2, when Cheryll went for her weekly family therapy, she noticed an abrasion over Isaiah’s right eye.
Sandy Pines records say he was hurt during a struggle the day before. Staff had held him down to stop him from banging his head on the floor of the quiet room.
Cheryll simmered over the injury during the therapy session and abruptly left when it was over.
Staff members felt that Cheryll’s anger and antagonism were eroding their control and causing her son to confuse discipline with abuse.
A January progress note suggested she impeded the treatment by “attempting to split staff and enable her son’s irresponsible behavior through threatening to call the Department of Children and Families when her son receives a PRN (injection) or sustains a physical injury from requiring restraint.”
Cheryll said part of that is true: She was outraged with Sandy Pines and did ask DCF to investigate.
Through the month of February, Isaiah often exploded, running down the hall screaming one night after he was told he would have to eat dinner alone again and attacking staff who said he couldn’t go on a Fun Friday field trip.
Staff members, unable to keep the boy from kicking them in the face, confiscated his sneakers.
He then padded around in his Batman slippers.
But he warned them he could still fight. He pointed to his fingernails and teeth.
“I still have these,” he said.
In September, when Isaiah was admitted, the Sandy Pines psychiatrist described him as hyper and “defiant.” In March, after six months of restraints and Haldol injections, the boy was described as unstable and “extremely defiant.”
Sandy Pines acknowledged in his discharge papers that it had not been able to help him.
“The behavioral plan was discontinued due to ineffectiveness,” officials wrote.
On March 3, the state transferred Isaiah to a smaller psychiatric program in Broward County run by Alternate Family Care Inc.
EXPERTS: CASH SHOULD GO TOWARD PREVENTION
Child advocates say the high costs of residential treatment centers such as Sandy Pines are better spent on prevention programs.
Like prisons, they say, inpatient psychiatric programs can harden children more than they rehabilitate them, exposing them to much more violent and disturbed peers.
In 2001, a well-known consultant hired by the state was alarmed by the number of young children in Florida programs. He found 7- and 8-year-old girls who lived at the Tampa Bay Academy, a program similar to Sandy Pines, for 18 months.
The child welfare expert, Paul DeMuro, said no child under the age of 11 should be placed in a residential treatment center. Even 11- and 12-year-olds should be in intimate settings with only four to eight beds, he wrote.
DFC said this spring that it had more than 600 children in the state’s inpatient psychiatric programs. Isaiah was one of three 6-year-olds. Four 7-year-olds, eight 8-year-olds and dozens of 9- and 10-year-olds also were committed.
Carolyn Salisbury, who represents many children in South Florida psychiatric hospitals as associate director of the University of Miami’s Children & Youth Law Clinic, said the child patients can become “zombified” from medications. And a few leave more ill than when they arrived. Some who are not schizophrenic begin saying they hear voices, she said.
Many children at Sandy Pines and Alternate Family Care have been sexually abused and are at risk of molesting others, according to police reports.
Isaiah was fluent in curse words by the time he reached kindergarten. But his file says he has never been abused or sexually molested. Compared with many of the disturbed children at Sandy Pines and Alternate Family Care, he is an innocent.
Four years ago at Alternate Family Care, Hollywood police investigated the case of a 14-year-old patient who said he had oral sex with a 6-year-old boy and 7-year-old girl. Detectives could not find out whether his story was true and did not file charges. But inside the teenager’s room, police found a toy doll, naked and hanging from a noose of red ribbon.
Cheryll said she talked to Isaiah about good touch and bad touch and believes he would tell her if anyone had tried to hurt him. But she is angry that, at the same time Isaiah was learning to tie his shoes, he also was learning how to recognize a condom. She jumped when he used the word in front of her one day, pointing to medicine wrapped in a foil package.
After a year in psychiatric programs, Isaiah can quote the patients bill of rights but knows little about being a typical boy.
When he started to lose his baby teeth, Cheryll said she told staffers that he believed in the tooth fairy. If she gave them a crisp bill, she asked, could they slip it under his pillow?
No, she was told.
DESPITE PROGRESS, ‘WILL HE HAVE NORMAL LIFE?’
When Isaiah was released from Sandy Pines, the psychiatrists judged his prognosis “poor-fair.” He was violent, they said. He showed no remorse.
But at Alternate Family Care, Isaiah improved quickly. He told his mother he never got restraints or injections there.
Isaiah is visiting home nearly every weekend now, and Cheryll believes he soon will be home to stay.
He speaks a strange therapeutic language, thanking her for “empowering” him and lecturing his cousins about anger management, Cheryll said. But he seems better. For the first time, he is able to stop himself when he begins to get angry. He is able to talk about the hospital and his fears.
The state also sent Cheryll to therapy. She, too, is calmer now. She said she is better able to discipline her son.
So much, Cheryll says, depends on whether the state can keep Isaiah and other emotionally disturbed children from growing into violent adults. Long-term studies show that half of the children once treated in a residential psychiatric program are arrested by their teenage years.
Cheryll still wants to take parenting courses from an expert who visits homes all over the country. She still wants Isaiah to have specialized attachment therapy. She still doesn’t have the money.
She thinks a lot about his future: “Will he have a normal life? Will he have a wife?” She worries.
After his success at Alternate Family Care, she is more hopeful but knows the future will be hard.
Cheryll is haunted by that day in July 2002 when she lost Isaiah to the state.
It was his last day of therapy for the summer, and she had come to take him home. She told him to get his book bag, so they could get going. Instead of the bag, he came out with a broom, swinging it over his shoulders. His therapist told him to put it down.
Isaiah shouted no. The therapist snatched it away.
Isaiah whipped into a rage. He howled and sprinted across the lobby. Cheryll thought he was headed for the door.
He hit a picture window. Glass shattered. He screamed. A tendon spiraled out of his arm. Blood dripped down and soaked into his clothes.
Everyone was there, Cheryll said, including her, his behavior aide, his therapist, a top official in children’s mental health.
They all watched, stunned.
No one could stop him in time.
Copyright 2003 Palm Beach Newspapers, Inc.
Palm Beach Post (Florida)
August 10, 2003 Sunday
FINAL EDITION
SECTION: A SECTION, Pg. 1A
LENGTH: 3808 words
Hi Kathleen,
I am currently a graduate student training to be a mental health counselor and I came across this story about Isaiah White (2003). I was wondering if you knew what his status was? It is truly a tragedy and one of the reasons I am getting in to counseling is to prevent such injustices. I commend you on your story and would love to know what became of Isaiah–if he ever got more help and how he is doing? Thanks so much, Liz Friedmna
Kathleen,
Wow! I got this article sent to me by Liz Friedman who I am in Graduate School with. It’s amazing that something couldn’t have been done for Isaiah. Please let us know what has happened with him since then.
Thank you for all your doing,
Leah Krumme
[...] Saving Isaiah [...]
Please tell us how Isaiah is doing now? Really scary stuff…..
Click here to read an update on Isaiah from just last month.
I disagree. I think Isaiah was completely out of control. He was endangering himself and others. I think this place was justified in the use of restraints. Im glad this boy is doing better but had he not been committed this article would’ve been about a young boy who seriously injured or killed someone…