CHICAGO — When Patrick Bouvier Kennedy was born prematurely Aug. 7, 1963, his lungs were so severely underdeveloped he could not breathe on his own. President and Jacqueline Kennedy's third child died two days later.
The sad truth is that 25 years ago, there was little that could be done to save a baby like Patrick. But today, with the help of mechanical respirators and other medical advances, the treatment of pre-term, low-birth-weight infants has become almost routine.
"If we had a patient like that now, it would be reasonable to expect he would survive," said Dr. Mark Schreiner of Children's Hospital of Philadelphia. "There are hundreds of thousands of premature infants born every year who require mechanical ventilation, and who survive. Most of them are off the respirator in less than six months."
But there are still some babies medical science is struggling to help. Like other premature infants, they require a respirator to keep breathing. Unlike the others, they never seem to get off the machine, not for months and sometimes not for years.
In 1983, Dr. C. Everett Koop, the U.S. surgeon general, called these respirator-dependent children a "new category of disabled child--a category created by technology." The machine keeps their lungs pumping but also keeps the lungs from pumping themselves.
Many in the medical community consider these children a lost cause. The feeling is that these children--who number about 2,000 nationwide at any one time--will never gain the strength or ability to breathe for themselves, will die eventually, and perhaps should not be made to suffer through months on machine in the meantime.
"Their intent, I think, is compassionate," Schreiner said. "But their prognosis is wrong.
Further, he added, "I would challenge anyone to come into our intensive care unit and look over these children and decide which ones they want to take off the ventilator. Tell me which ones are going to live and which will die."
Schreiner argues, and the experience at the Philadelphia hospital seems to suggest, that ventilator-dependent babies have a chance, if given that chance.
In a recent study in the Journal of the American Medical Assn., Schreiner reported that since 1967, the hospital has had a 70% survival rate with ventilator-dependent children, and "in the past three years, it has been more like 85% or 90%."
"Most of them do very well. It's just a question of time and growth," said Dr. Marc Hershenson of Children's Hospital in Boston, which uses similar techniques.
Treating a ventilator-dependent child can run well over a quarter of a million dollars, and there is no guarantee of success. Dr. Eduardo Bancalari of the University of Miami School of Medicine suggests these costs must be scrutinized carefully to determine if they are the best use of resources.
"Under ideal circumstances with unlimited resources, these economic considerations should not influence our decisions regarding patient care," Bancalari wrote in a Journal editorial.
"However," he said, "in an era of increasing restrictions in medical financial support . . . we must set priorities and look for alternatives."
Premature babies come into the world with many defects. Their hearts, brains and eyes are often not ready for life outside the womb. But the most deadly deficit affecting those born too soon is in the lungs.
Preemies with underdeveloped respiratory systems lack sufficient quantities of surfactant, a slippery chemical that keeps the small air sacs in the lungs from collapsing. Should these air sacs, or alveoli, close, the baby will not be able inhale oxygen and dispel carbon dioxide adequately, and will develop a disorder known as respiratory distress syndrome.
In many cases, doctors can prevent or ameliorate respiratory distress by giving the infant manufactured surfactant (usually derived from cows), but often a child with this condition will have to be put on a ventilator for anywhere from several hours to several weeks.
In mechanical respiration, a tube is placed directly into the trachea through an incision made in the throat. Oxygen, carbon dioxide and other chemicals are carefully monitored and controlled by the respirator and, after a time, doctors try to wean the infant by reducing the amount of oxygen, forcing the baby's lungs to do some of the work themselves.
Unfortunately, not all babies have lungs capable of taking over. They develop chronic respiratory failure, and they stay on ventilators--until they die, it was once assumed.
53 Successfully Weaned
"Although that clearly doesn't have to be the case," Schreiner said.
In Schreiner's study, 101 children spent an average of 12.3 months on mechanical respiration. Fifty-three had been successfully weaned from the respirator, 18 were still on the respirator and 30 had died. Schreiner said the difference between the children who lived and those who died appeared unrelated to how long they needed to stay on the ventilator.