By Sam Roe and Jared S. Hopkins
Tribune staff reporters
10:24 PM EDT, October 7, 2010
Nine-year-old Jeremiah Clark survived for years not being able to walk, talk, go to the bathroom by himself or eat without a feeding tube.
But ultimately he could not survive living at Alden Village North.
One morning last year, when the facility for children with severe disabilities dropped Jeremiah off at school, teachers were alarmed to see fluids leaking profusely from the hole where his feeding tube entered his abdomen. His shirt and pants were soaked, and a teacher had to use a mop to clean up the puddle under his wheelchair.
The school had Alden Village North pick him up, but teachers were outraged when he returned to class the next morning looking worse than before — pale, lethargic and moaning. Teachers placed him on a mat, where he shook in the fetal position.
A school nurse said she demanded that Alden Village North come for him immediately, but the facility balked, telling her to give him Tylenol. Three hours passed before Alden picked up Jeremiah, even though the facility is a five-minute walk away. Back at Alden, records show, staff did not assess his illness, monitor him during the night or even call a doctor until the next morning.
Jeremiah soon died in a hospital of shock, infection and a bowel obstruction. Before Jeremiah's death, a physician told his mother that surgery — though physically punishing and an extreme long shot — could be attempted.
"No," his mother responded. "He's been through enough."
Jeremiah is among 13 children and young adults at the North Side facility whose deaths have led to state citations since 2000, a Tribune investigation has found. Some of these deaths, records show, might have been prevented had officials at the facility taken basic steps, such as closely monitoring residents and their medical equipment.
Despite the mounting deaths, the facility has not improved its care over the years, records show. The state has found more serious violations there in the past three years than at the other nine Illinois homes for children with disabilities combined.
Shannon Moffitt, one of Jeremiah's teachers at Gale Elementary, said her school would need a full-time staffer just to deal with all of the day-to-day issues involving the students living at Alden, from poor hygiene to lack of proper clothing.
"I hold my breath every time I send my kids back home there," she said.
Alden Village North, formerly known as Mosaic Living Center and the Pediatric Rehabilitation Institute, has had three owners in 10 years. According to the state, the operator since 2008 has been Floyd A. Schlossberg, president of Alden Management Services. His firm runs more than 20 nursing facilities in Illinois, primarily providing care for the elderly.
Schlossberg did not respond to requests for an interview or to questions about Jeremiah's care and his mother's suit against the facility. In a brief statement, his company said it could not comment on matters involving pending litigation.
To piece together Jeremiah's final days, the Tribune interviewed key witnesses and reviewed state documents obtained through the Freedom of Information Act, including inspection reports on Alden, statements by facility employees and notes by Illinois Department of Public Health investigators.
A former nurse at Jeremiah's school, Felicia Wenz, told the newspaper that his death was one of the most egregious cases of child neglect she has seen. "That had to be the most painful death imaginable," she said.
Moffitt said Jeremiah did not have to die.
"It's just sick," she said. "It's disgusting. It still haunts me."
Kathern Clark never wanted to put her son in a nursing facility.
For years she had cared for Jeremiah in her suburban Harvey apartment, carrying him from room to room, changing his diapers and feeding him four times a day through his gastrostomy tube, or G-tube, which allowed food to be pumped directly into his stomach.
Doctors, she said, had inserted the G-tube when Jeremiah was 18 months old because he was having trouble holding food down and gaining weight. More seriously, he was exhibiting severe developmental delays and was eventually diagnosed with profound cognitive disabilities.
He could not walk, talk or play many games like other children. Although he enjoyed rolling around the living room floor with his brother and sisters, he often became too excited and started scratching and clawing, and the fun would have to stop.
When Jeremiah again had trouble gaining weight, he was hospitalized, and a doctor recommended that he be placed in a nursing facility to ensure he would thrive. His mother, who was single and unemployed, said she feared that if she didn't put him in a facility, child welfare authorities would seek custody.
So in 2004, when Jeremiah was 4, Clark put him in the closest available facility to her home that cared for children with disabilities. Alden, then called Mosaic Living Center, cared for about 90 children and adults with disabilities, including blindness, cerebral palsy and cognitive impairment. When Clark toured the facility, an aging brick building on Sheridan Road in Rogers Park, she thought the staff was friendly and the children well cared for.
And at first, Jeremiah had few problems. But in 2007, staffers found him one morning crying and irritable, a state inspection report says. Several hours later he was sent to a hospital, where doctors discovered he had a broken arm. Clark sued Alden, alleging neglect, but she said she didn't move him because the next-closest appropriate facility was far away in Indiana.
She said she continued to visit him as much as possible, taking a two-hour bus trip to the North Side. On nice days, she would wheel him across Sheridan to Lake Michigan, where she would lift him out of his wheelchair, show him the water and whisper in his ear: "Mommy loves you. It's going to be OK."
She also enrolled him at Gale, a Chicago public elementary school a few blocks from the nursing facility. Of the 510 students, 16 had multiple disabilities and severe cognitive impairment. For them, schoolwork involved learning simple skills, such as how to hold a cup.
Moffitt, a special education teacher, said she was trying to teach Jeremiah to grasp objects. Over and over she would place her hand atop his and move it to an object, hoping he could do it on his own someday. His progress was slow. Moffitt estimated Jeremiah's cognitive age at about 6 months.
But she found him to be an easygoing, happy child whose head was in constant motion. His biggest thrill, she said, was "mat time." For 40 minutes each morning and afternoon, teachers would place Jeremiah on a large blue mat, where he would roll from side to side, clutching a red plastic tambourine in one hand and hitting it on the mat to jingle the bells.
The boy's face would light up, and he would exclaim, "Ahhh! Ahhh!" He banged the tambourine so much that Moffitt had to tape it together repeatedly.
When Moffitt began teaching at Gale in the spring of 2009, she had a master's degree in special education and 14 years' experience. She had heard little about Alden but said she immediately noticed that its students were different from kids living at other facilities or with their families. Their hygiene was often poor. Their clothes were frequently too small. Some of their wheelchairs needed repairs.
But more jarring was what she and other Gale employees saw the morning of May 19, 2009, when Jeremiah arrived at school with a yellowish liquid drenching his shirt and pants and dripping onto the floor.
It appeared that the liquid was leaking from his G-tube, but when Wenz, the school nurse, looked closer, she saw that "it was coming out of his abdomen, where the G-tube is inserted," according to her statement to state public health investigators.
Wenz called Alden and had the facility pick Jeremiah up from school.
What Alden staff did next is unclear. Investigators found no evidence that nurses inspected Jeremiah's G-tube or examined his abdomen for signs of bowel obstruction. One Alden nurse told a supervisor that she did do such an exam and found nothing, but she did not document her observations in her nursing notes. Other Alden staffers told investigators Jeremiah appeared normal.
But overnight, nursing assistant Patrick Frimpong told investigators, Jeremiah was "tossing and moaning all night long."
The next morning, Gale staffers were astonished to see Jeremiah back in school.
"He was pale. His eyes were sunken like he was awake all night," Wenz told investigators. "He was shaking and grunting and in a fetal position."
Moffitt said Jeremiah's G-tube wasn't leaking like before, but she knew he was sick as soon as she helped him off the bus; he had little energy and was moaning, something she had never heard him do before. When she placed the boy on the mat in her classroom, he didn't roll around with the tambourine but lay on his side and groaned.
At 9:45 a.m., Wenz asked Alden to pick him up from school, but, according to her statement to investigators, "the nurse at the facility argued with her and said to give him Tylenol."
An hour and 45 minutes later, Jeremiah continued to lie in the fetal position, records state. His skin was clammy, and he was making gagging sounds. Moffitt told investigators she didn't call 911 partly because Jeremiah didn't have a fever. But the school nurse called Alden again, this time complaining to the director of nursing.
Finally, at 12:45 p.m. — three hours after the school initially called — an Alden case manager showed up. Teachers lifted the boy from the mat and placed him in his wheelchair. The case manager then began pushing Jeremiah back to Alden.
When Jeremiah arrived at the facility, nurse Anna Jimenez reported he was moaning but not feverish, according to her nursing notes and statement to investigators. She decided to give the boy Tylenol.
Investigators would later ask why she didn't call a doctor. "I assumed he looked well," she responded. "And I was about to leave." Her shift was ending.
That night, Jeremiah's nurse was Morayo Oladeinde. When she came on duty at 11 p.m., Jeremiah was sleeping but "restless off and on all night," she reported. She gave him more Tylenol.
She told investigators that Jeremiah wasn't moaning, but Frimpong, the nursing assistant, reported that the boy — for the second night in a row — was "tossing and moaning all night." Jeremiah, he said, "looked really sick."
Oladeinde's night shift ended at 7 a.m. She was relieved by Digna Fatog — the only Alden nurse, records show, who reacted to Jeremiah's condition with urgency.
When Fatog began her shift, she found Jeremiah in his wheelchair, pale and lethargic. Alarmed, she asked the night nurse why she hadn't sent him to a hospital. Oladeinde did not answer, Fatog said. When investigators later asked Oladeinde why she did not call Jeremiah's doctor, she said, "No reason."
Fatog's nursing notes said Jeremiah's abdomen was distended "with board-like rigidity." Another nurse told investigators the boy was moaning, his heart rate was up, he was drooling excessively and he was sweating so much his clothes were wet.
Fatog noticed his oxygen saturation rate — the concentration of oxygen in the bloodstream — was low: 89 percent, compared with a normal range of 95 to 100 percent.
She immediately hooked up Jeremiah to an oxygen tank and called the boy's family and physician — the first time, records show, anyone had called his doctor in the 48 hours since he showed up at school with his abdomen leaking fluid.
The doctor gave orders to send Jeremiah to the emergency room. Ambulance paramedics found him breathing rapidly and his pulse racing at 160 beats per minute.
At Advocate Illinois Masonic Medical Center, emergency room doctor Max Koenigsberg saw that Jeremiah was pale, gray and in shock. Blood was in his G-tube, and he had bloody diarrhea and a massively distended abdomen. Jeremiah had stopped breathing on his own, so a tube was inserted into his windpipe, and he was connected to a ventilator, records state.
About 11:15 a.m. Jeremiah was transferred to Children's Memorial Hospital, where physicians found him to be in extremely critical condition, likely related to a "catastrophic" event involving his stomach and intestines, probably an obstruction of some kind, records state.
On the way to Children's Memorial with her sister, Jeremiah's mother didn't realize how sick he was and thought he would be fine. He had been in and out of hospitals many times before.
She said she was stunned when a doctor called her cell phone to say Jeremiah was in grave condition and "may not survive even if he could tolerate a surgical procedure."
Unwilling to subject her son to any more suffering, she decided to forgo surgery and let him go. Hospital staff took photographs of the two of them together as well as ink and plaster prints of one of his hands. Jeremiah then died at 9:25 p.m., in his mother's arms, surrounded by family.
When Jeremiah wasn't in class the next day, a Friday, Moffitt thought he was out sick. It wasn't until the following Tuesday that the teacher learned from a school attendance aide that Jeremiah had died.
"I don't think I've ever been shocked like that in my life," she said. "After that, shock had a new definition. Never ever, ever, did I ever think he was going to pass away — ever."
There was no public announcement of his death at the school. No e-mail was sent to parents. When Jeremiah's "book buddies" — the Gale students who read to him — asked where he was, Moffitt felt she had to tell them.
One student wanted to know: Why did he die?
"Unfortunately, that sometimes happens to children with multiple disabilities," she said she responded. "His body just gave out."
But she didn't believe that.
A few days after Jeremiah was buried, Moffitt called the Illinois Department of Public Health and filed a complaint against Alden.
Over the next several weeks, investigators interviewed Alden nurses, Gale staff and Jeremiah's doctors.
When investigators asked Tess Adriano, then Alden's acting nursing director, why it took so long for her staff to call a doctor, she said, "I don't know."
She then pointed fingers at Jeremiah's school, records show, asking why the teachers didn't call 911 if they thought he was in so much distress.
In an interview with the Tribune, Moffitt responded: "I'm not his guardian. I'm not Alden." She said that when a teacher sends a student home sick, the expectation is that the parent or, in this case, the facility will seek proper medical care.
"It was horrible — horrible — to know that I sent him home and nothing was done," she said.
When its inquiry was complete, the state cited Alden for several violations, including neglect. Regulators said Alden didn't recognize Jeremiah's illness, assess him before sending him to school or promptly notify a doctor of his condition.
They fined Alden $35,000 — the eighth fine against the facility in the last 10 years. As in some previous cases, Alden is contesting the citations and fine. A hearing is scheduled for February.
In July, Jeremiah's mother amended her lawsuit against Alden, changing it from a simple neglect case over his broken arm in 2007 to a wrongful-death claim.
"If he would have stayed home with his mother, none of this would have happened," said Craig Manchik, an attorney representing Jeremiah's family. His mother agreed: "I could take care of him better."
Moffitt said she worries that more children will be neglected at Alden. "How many times does this have to happen before they close it down?" she asked. "Who's responsible for doing that?"
The Illinois Department of Public Health, which oversees Alden and other facilities for people with developmental disabilities, has "grave concerns" with the facility and will shut it down if problems persist, said spokeswoman Melaney Arnold. "There is never an excuse for a death due to negligence," she said.
Moffitt has two keepsakes to remind her of Jeremiah. One is the memorial booklet from his funeral, which she keeps in her desk drawer at school.
The other is the battered red tambourine the boy loved so much. Shortly after he died, Moffitt pinned it to a bulletin board in her classroom.
It hangs there today, without note or explanation.
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