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School fights parents over decision to not resuscitate
DETROIT — He’s not a boy, he’s a young man — 22 years old with a jaunty mustache. But a debilitating birth defect makes him look younger than his years. His throat muscles are too weak to let him swallow, so he’s fed through a tube. He’s in a wheelchair, and can’t talk — but he feels joy and recognizes his family. And his parents love him. That’s why, when the time comes, they want to let him quietly pass away. Not with tubes stuffed down his throat. Not with someone pounding on his chest. So they’ve done what once was unthinkable for them. They signed a Do Not Resuscitate order for their oldest child. And as they’ve battled all his life for treatments to make him better, they’ve battled his school to ensure the DNR order will be followed. “You never imagine doing it for your child,” the father said earlier this year, sitting in the family’s Novi, Mich., home. “But if he went on a ventilator, he wouldn’t come off. He’d spend his last four or five months as a vegetable.” The use of DNR orders is relatively new ground for schools. No one tracks how many students have such orders, but anecdotal evidence suggests that there are dozens in Michigan. And as more children with severe health problems reach school age because of medical advances, the number of DNR orders is expected to increase. In some districts, children who are terminally ill also have DNR orders. There is no consistency from district to district — or state to state — on how much these orders are followed. Some schools readily agree while others say their staffs cannot make decisions involving the end of a child’s life. The young Novi man’s school initially threatened to call Child Protective Services when confronted with the DNR. “This is such a medical decision,” said Thomai Gersh, supervisor of special education at the Wing Lake Developmental Center in Oakland County, Mich., which honors the orders. “But what role does the school play if we are an educational facility? Where do we draw the line? ... Those were the kinds of things that were real dilemmas that we spent a lot of time talking about.” The young man from Novi attends Cooke School in Northville, a center for students with very severe cognitive and emotional impairments. For children with conditions like his, school often is the only place they go without a parent, and Michigan law allows them to attend until they are 26. They may not be learning the way most students do, but experts say they benefit immensely from the contact and interaction. The young man’s parents said they want to be agents of change, helping him and others like him whose parents want schools to honor the orders. Northville schools eventually agreed to work with the Novi family, but the family would rather that no one else have to wage the same fight. “I think they have done an amazing job,” his mother said of the school. “Many of these kids who were born 20 years ago are like” him “now ... school districts are going to have to start dealing with it.” The Free Press is not naming the family because of the parents’ concern that their other children could be harassed, that the family’s home could be targeted for protests or that someone might pursue legal action that could cost them custody of their son. The young man was born with lissencephaly — a condition where the brain is almost smooth, devoid of the ridges and folds of a normally developed brain. Those ridges and folds increase the brain’s surface area, allowing brain signals to be transmitted. A smooth brain has less capacity to send those vital signals. There is no cure for lissencephaly. In its most severe form, children with completely flat surfaces die very young. The young man’s brain is not completely flat, but he is severely cognitively and physically impaired. When asked what he knows, his mother replied, “He knows his people, the kids coming to our house. He knows kids at school.” When he was born, doctors told his parents that he wouldn’t survive beyond age 2 or 3. The parents, wanting to extend his life, signed off on one treatment after another for more than two decades. There were surgeries to repair a dislocated hip — an effort to preserve the mobility he had as a child, even though his fragile body had to be placed in a cast to ensure proper healing. Metal rods were inserted to straighten his back and keep him from putting too much pressure on his organs. Countless hours were spent in hospitals as doctors tried to figure out ways to combat seizures. “I was very obsessive,” his mother said. “He did learn to walk with a walker by the time he was 4. He did things the therapists said he shouldn’t be able to do.” But new physical setbacks have surfaced in the last 10 years. The most recent was last summer, when he went several weeks without eating any solid food. His seizures were more frequent, his breathing more labored and he choked on his own saliva. What little he ate went into his lungs, leading to pneumonia. “We saw his mortality,” his mother said. The parents slowly reached the conclusion that while they wanted to let their son live out his life, they also wanted to stop the major surgeries and procedures that no longer were improving his quality of life. Dr. Ken Pituch, a professor of pediatrics and a palliative care doctor at the University of Michigan’s Mott Children’s Hospital, said there are a growing number of children like him, with birth defects so severe that they never would have survived a generation ago. These children are here today thanks to technology, hospitalization and specialized programs to support them in schools. But they come to class physically fragile. “These are children who are completely dependent for all care,” said Pituch, who has worked with the Novi family. He added that even though modern medicine has brought them this far, these children still are at a point where “survival is expected to be measured in months rather than years.” Parents eventually decide to focus on the quality of life, rather than technical or surgical interventions that may prolong life, Pituch said. The family in Novi had not considered a DNR order until a nurse from Cooke suggested the parents talk with palliative care providers, whose job is to treat the mental and physical problems of the terminally ill. “The philosophy of palliative care is really to maximize the patient’s quality of life,” said Maureen Giacomazza, a clinical nurse specialist with the palliative care consultation service at Mott who has worked with the family. After doctors worked with the family to draw up the DNR order, they suggested taking a copy to Cooke. The order states that if the young man takes a turn for the worse, he is to be given oxygen and made comfortable. His mother should be called immediately. The order bars invasive treatments. The doctors said his throat muscles are so weak there is only a 2 percent chance that breathing tubes could ever be removed. He will not have CPR, a treatment that could crush his frail ribs, or be treated with a defibrillator. One week after the order was delivered, his mother got the school’s response in the mail. Northville Public Schools officials would not honor the DNR. And a second letter from the district sent chills through the parents. “Protective services will be formally notified of any DNR requests,” the letter said. It was devastating for parents who had fought for so many years to maintain their son’s health. Giacomazza said DNRs sometimes can be construed as the parents giving up. “I’ve been working here for 25 years, and I have yet to meet that parent who’s giving up,” she said. The Cooke student’s mother called the school the day after the letter arrived. And staff from Mott stepped in to help, meeting with educators and explaining the order. Northville officials finally changed their policy. They said they could not accept a DNR order without reviewing it. But the district spent several weeks developing a policy that allows the orders to be part of a comprehensive medical plan developed in conjunction with a student’s family. The signing of the DNR order was a difficult decision for the Novi family. “I had met with the physicians two weeks before. We’d talked about it, but I wasn’t ready to do it,” the mother said. “Then he was sick again. And I was ready.” She said it was a surreal experience for her. Doctors kept asking whether she understood the consequences. “I didn’t cry then,” the mother said. “The doctors kept asking me if I was OK because the previous week I was hysterical” talking about the DNR. “Then I went home and I was crying. I couldn’t believe I was doing this to one of my kids.” The couple is approaching the future the way they always have. Their son will go to school with the laminated DNR order tucked in his backpack. At the same time, they’re exploring new medical procedures to slow his decline. They realize another regression will come. They just don’t know when, and they don’t know whether it will be the last one. (c) 2008, Detroit Free Press. Distributed by McClatchy-Tribune Information Services. E-mail this story | Print this story | Search archives | RSS Show comments |  Hide comments | Hide comments on all stories |
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