When life hangs by a tube
With mortal risks, ventilators bring ill children new mobility
Globe Staff / July 24, 2008
Every night at bedtime, Julie Leahy and her young daughter Jessica pray.
Jessica, 6, uses a ventilator, an expensive and temperamental machine that has kept her alive since birth. But just barely. If the electricity goes out or a tube accidentally detaches, the girl's life plunges into jeopardy.
Julie Leahy and her husband sleep lightly, always aware of the machine's gentle wheeze. When Leahy read in the newspaper last week that an East Boston teenager living on a ventilator had died during a power outage, it was a sharp reminder of her own child's fragile existence.
"I couldn't even imagine losing my daughter that way," Leahy said this week, sitting in the living room of her West Newton apartment.
Thanks to advances in technology, more children than ever are living on ventilators at home, instead of in intensive care units. The children are among the sickest in the state, but the newly developed portable ventilators allow them to survive outside a hospital.
Yet the medical progress comes at a cost. The bedrooms of those living with ventilators often resemble hospital rooms. And their loved ones, often their parents, become constant caretakers, medical specialists by circumstance.
"The technology has advanced to the point where children who would not have survived do," said Jane O'Brien, medical director at the Franciscan Hospital for Children in Brighton, one of the few post-acute care facilities for children on ventilators in New England. "It's unbelievable. What parents go through is unbelievable."
Some children, like Fernando Vargas, come home to an apartment on the first floor of a city housing project. Others, like Jessica Leahy, live in suburbia. According to a study in the Journal of Pediatrics, more than 200 children lived on the machines in Massachusetts in 2005, a threefold increase since 1990.
Vargas died about dawn Friday when the ventilator he relied on stopped working during a two-hour power outage. Family members awoke early to the sound of his ventilator's built-in alarm. His stepfather plugged in a backup battery. Police have said a preliminary investigation showed that the backup malfunctioned. When the family's live-in personal care attendant checked Vargas less than an hour later, he was dead. The machine was silent.
Vargas's portable ventilator, a square computer on a tall stand connected to a series of wires and hoses, was manufactured by Pulmonetics Systems of Minnesota. The system, paid for by the state, was apparently under recall by the company and the US Food and Drug Administration. Vargas's unit has been sent to the manufacturer for testing.
Pulmonetics was one of the first companies in the nation to develop a take-home ventilator for children.
Infants who are born prematurely, with underdeveloped lungs, often require ventilation, as do children born with lung defects or other degenerative diseases. The machine usually sits bedside. Children are tethered to the device, which looks a bit like a podium, and rely on it to keep them breathing. Some need the device around the clock, others only part of the time.
Newton resident Kathleen Rice said that getting a new, portable ventilator allowed her son Joey to come home from the hospital for the first time at age 3 and dramatically changed the family's life. She had delivered twin sons prematurely in 1997. One was healthy; the other grew sick after being given a massive dose of a drug that should have been diluted.
In 2000, Joey Rice became the first boy in Massachusetts to use a child-sized Pulmonetics portable ventilator at home.
Life still hasn't been easy. Rice can carry her son's ventilator and heavy lithium battery in an over-the-shoulder bag. But she also has to tote a generator as heavy as a computer hard drive that powers the suction of secretions from her son's airways. She once tore a group of muscles in her shoulder hauling the equipment.
Caretakers have been able to slowly wean the boy from his portable ventilator, which he now needs only during the night. Yet Rice said she continues to live a "crisis-driven life." Last month, her son had a seizure at 5:30 one morning. The ventilator alarm sounded, alerting her husband.
"We have to always be alert to the alarms," Rice said. "I will lay down, but I don't really sleep."
Julie Leahy lived with Jessica for a year in the hospital before the girl was able to move home to West Newton. Born with a rare nerve disorder, the 6-year-old has learned sign language and has undergone intensive physical therapy to open and close her mouth, allowing her to eat. Her ventilator is the same model as Vargas's, but not under recall.
Steven Snyder, chief development officer at Franciscan, said it is one of the only places for children on ventilators whose parents are unable to care for them. With 16 beds for these patients, the hospital relies heavily on private and state insurance, and on donations, to pay for the care. "They're very expensive," Snyder said of ventilators for children. "But it's an incredible program."
Yesterday, two young mothers sat in a post-acute care unit at Franciscan, tending to their baby daughters on ventilators. The women said they spend most of their days at the hospital, holding their daughters and hoping the children will grow strong enough to be weaned from the machines.
Susie Labbe, 23, of Keene, N.H., cradled her 10-month old in a rocking chair amid a tangle of tubes and wires. Baby Nevaeh was born severely disabled with no clear diagnosis. Labbe does not know what the future holds, but "we're here now," she said.
Shareka Young of Dorchester bounced her 1-year-old, Honesty, on her lap. The child was born extremely premature - only 1 pound, 8 ounces - yet the only seeming sign of a problem is a tube emanating from her neck. Young said she sits with her baby from 8 a.m. to 6 p.m. most days before leaving for her job as a cashier.
She hopes the baby is able to live with her in Dorchester soon. "A whole year we've been here," Young said. "It's time to go home."
Megan Woolhouse can be reached at firstname.lastname@example.org
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