COLUMN ONE : Treating the Pain of Children : Young patients often are given nothing to ease their suffering. But researchers are finding that unrelieved torment poses serious health consequences. Safe treatment is being sought.

On Feb. 9, 1985, a Maryland housewife gave birth to a baby 3 1/2 months early. Jeffrey Lawson weighed only 1 pound, 11 1/2 ounces, and was 12 3/4 inches long. To survive, the boy needed surgery to tie off an unwanted blood vessel near his heart.

It was an operation often performed on premature babies with underdeveloped cardiovascular-pulmonary systems. Several procedures were done at once.

Holes were cut on either side of the infant’s neck and a tube inserted into his chest. An incision was made from his breastbone to his backbone. The baby’s flesh, ribs and one lung were pulled aside and the blood vessel was tied off. Finally, after the chest cavity was sewn up, another hole was cut in his side and a tube was inserted into his lung.

Jeffrey survived only five weeks after his surgery, which left his parents, Jill and James Lawson, devastated. But the couple was horrified when they learned months later that none of the surgical procedures had been performed under analgesia.

Instead of narcotics--or even mild pain relievers--the baby had received only pancuronium, a powerful paralytic drug that stopped all his voluntary muscular movement but did nothing to ease his suffering.

What happened to the Maryland infant was not an anomaly. Until as recently as six years ago, hospitals throughout the United States frequently operated on critically ill premature babies without using painkillers. The tinier and sicker the child, the less likely they received pain medication--a practice that still occurs in some circumstances, according to pain experts.

“Most adults would be shocked if they saw what was done to children in hospitals without anesthetics, “ said Dr. Myron Yaster, a leading expert on pediatric pain at Johns Hopkins Medical Institutions in Baltimore. “It’s like roping and holding down a steer to brand it.”

Newborns are not the only pediatric patients who suffer. According to surveys cited by Ronald Melzack and Patrick Wall in their book “The Challenge of Pain,” the vast majority of all ill children--whether they have cancer, an appendectomy or a broken bone--have been under treated for pain, if they are treated at all.

“For a long time, it was assumed that the risks associated with strong analgesics, especially narcotics, were simply too great for youngsters to tolerate,” Yaster said. “Moreover, it was thought that babies, especially newborns, do not feel pain. And even if they do, they would not remember it.”

Recent research has shown that children do feel pain. While pain medications are not risk-free, there is growing evidence that unrelieved pain poses serious health consequences and long-term psychological dangers.

Recognizing the dangers, a growing number of pediatricians, anesthesiologists, psychologists and nurses are changing the way they treat children in pain.

“I suspect in 10 or 20 years we will look back and see what we were doing to children, and think that this was an uncivilized period in medical history,” Yaster said.

A handful of hospitals--including Harvard’s Children’s Hospital, Johns Hopkins and UCLA--have set up interdisciplinary pain services just for children. Rather than leaving pain control to surgeons or ordinary anesthesiologists, the pain services use experts from a variety of disciplines to determine which medications and doses are most appropriate for each young patient. In addition to experimenting with new drugs and ways of administering those drugs, the services also use families and psychological interventions, such as hypnosis, to increase children’s tolerance of pain and their ability to cope with the anxiety that often accompanies it.

But while some pediatric practices have changed dramatically as a result of a growing understanding of pain, others have not.

A 1970 study showed that only half the children between the ages of 4 and 8 received painkillers post-operatively, even though some had undergone amputations and open-heart surgery. A study nearly two decades later showed little change. Over half the pediatric surgical patients surveyed in 1987 received no analgesics; the rest got inadequate doses.

“It is very, very important for parents today--in 1991--to find out precisely what is going to be done to their children to relieve their pain . . . for there is a chance nothing will be done,” said a New Orleans mother whose baby underwent two major brain operations without benefit of analgesia. The surgeries were performed at a major medical center only a few months ago.

In both procedures, the premature baby was considered too sick to withstand the stress of general anesthesia, according to the child’s doctors. But the parents see the matter differently. Had they not filed suit against the hospital on another matter related to their child’s care, they would never have seen their baby’s medical records; they would never have known analgesics were withheld. They say they should have been informed of the risks and given a choice.

“Doctors almost always assure parents their children will not suffer, but that is definitely not always the case,” said Helen Harrison, co-author of “The Premature Baby Book: A Parents’ Guide to Coping and Caring in the First Years.”

“Parents must learn to stand up and speak out and demand the kind of care they want for their children,” Harrison said.

Some changes have occurred simply because parents have spoken out. After her baby’s death, Jill Lawson wrote letters to medical societies and lawmakers. At first no one listened, but eventually a handful of doctors began to take note. Lawson’s story was told in “The Quality of Mercy,” a medical film produced in San Francisco for medical and nursing students. And recently she wrote an account of her child’s ordeal for Mothering magazine.

In 1987, two years after Jeffrey Lawson’s death, the American Academy of Pediatrics stated it was no longer ethical to perform surgery on pre-term babies without anesthetic. That same year, editorials taking the same stance also appeared in several medical journals.

The change in thinking also was based on a number of experiments in the 1980s showing that infants as young as a few months can tolerate narcotics, the most powerful painkillers.

One of the more dramatic studies, by British researcher Dr. K. J. S. Anand, showed what happened to pre-term babies who were not given painkillers during operations similar to Jeffrey Lawson’s.

Half of the newborns were given paralytic drugs; half were anesthetized with fentanyl, a narcotic that has proven safe for adults undergoing heart bypass surgery. Even though fentanyl is 100 times more powerful than morphine, the results were immediately clear: The anesthetized infants were not endangered by the drug and did far better than the other babies, who generally took longer to recover and had more post-operative complications. The results of the study, which appeared in the prestigious British journal Lancet in 1987, were so conclusive that researchers felt morally compelled to stop further research and publish their findings as soon as possible.

Whether newborns experience pain in the same way as older children and adults still is not known, said Anand, now a professor at Harvard Medical School. What is known, however, is that pain has a physical impact on infants similar to that of adults. Pain elevates blood pressure, increases heart rates, impairs sleep, alters eating patterns and breaks down the body’s immune system.

Consider the impact a circumcision has on a male infant. For years, American medical lore has held that surgically removing part of the penis is not painful. After all, the procedure is relatively simple and quick. In less than seven minutes, the foreskin surrounding the tip of the penis is cut away and the loose flaps of skin are stitched together again. Since it is normally done early in a child’s life when the infant is not fully developed neurologically, doctors assumed the child probably did not feel pain as an adult would.

That assumption is wrong, Anand said. Studies have found that recently circumcised infants show all the signs normally associated with pain. They are more irritable, more wakeful, less likely to eat and less responsive to their parents and care-givers than babies who have not had potentially painful experiences. Even more surprising, the changes in behavior can persist for hours and even days, which may indicate that infants also remember the pain.

Although penal blocks and other painkillers now are available, the American Academy of Pediatrics as recently as 1989 cautioned against using them for circumcision on the grounds that no large-scale study had ever been done to evaluate their risks and benefits.

“There have been almost no studies on the impact of painkillers on children, which means we don’t know how much or even what kind of drugs to give in what circumstances,” said Lynda Frank, head of intensive care nursing at Oakland Children’s Hospital.

Pediatric pain experts have learned in recent years that children are not simply smaller versions of adults. They have different physiological and biochemical makeups. So, too, are newborns different than older children. Each age group reacts to drugs in different ways; each metabolizes the same drug at different rates. In some cases, children need less medication than adults; in other cases they need more.

Convinced that pain still is not being treated in most hospital nurseries, neonatal nurse Gayle G. Page recently gave up her job at UCLA to work on a doctorate on pain management in the laboratory of UCLA psychologist John Liebeskind. In a series of studies on rats, which is expected to be published next year, Page has found that the stress of pain increases the growth and spread of cancer. If her early findings are borne out by research, Page will have confirmed a suspicion pain doctors have long had: pain is more than feeling discomfort; it can harm the body.

Research on animals now underway in England also indicates that when painful experiences occur while the nervous system is developing, the number of nerve fibers in the body may increase permanently. “If you fail to give a baby adequate pain medication, you may be setting that person up for a life history of being more pain sensitive,” said Dr. Lonnie K. Zeltzer, a pediatric pain specialist at UCLA.

No statistics are available on the suicide rate for children in pain. But it is becoming clear that children who suffer unrelieved agony or who repeatedly undergo painful medical or surgical procedures experience personality changes. One of the most common is “learned helplessness,” a form of extreme passivity. If not treated, it can jeopardize a child’s ability to form normal relationships, complete school or hold down jobs.

Although UCLA is among the few medical centers with an interdisciplinary pediatric pain service, only about a third of the children who undergo surgery at the hospital have access to it, Zeltzer said. The rest, she said, are not referred by physicians and surgeons. And so the treatment these children get may not be based on the latest research and the newest methods for controlling pain in young patients.

“Many doctors and nurses simply do not realize the dangers of pain,” Zeltzer added. “Until we begin to see pain control as a life-saving procedure like a heart transplant, there is not going to be a major change in pain management in this country.”

Even when they want to help, many doctors don’t always know what to do. Finding out how much a child hurts can be as formidable a task as figuring out what to do about it. While a 17-year-old may be able to describe how he feels, a 7-year-old has more difficulty, and a 7-month-old can do nothing but cry or withdraw. Moreover, medical experts and parents often mistakenly assume a child who is quiet is simply tired or being docile. In reality the child may be in so much discomfort that movement, speech or even tears are impossible.

Trying to assess pain more accurately, researchers have been experimenting with a variety of new pain scales. Some involve standards for evaluating cries, facial expressions and body movements. Others use happy faces and sad faces. Older children point to the faces to suggest what they feel inside.

Pain experts, however, continue to be stymied by the willingness of young patients to lie in order to avoid painful medical procedures or treatments. Many of the remedies for illnesses are painful--a fact children learn as soon as they enter a hospital or visit a doctor’s office.

“Imagine what goes through a child’s mind when the nurse approaches with the instrument most often feared by children--a syringe and needle--and tells the child that this shot will produce relief of pain,” Dr. Charles M. Haberkern of Children’s Hospital and Medical Center in Seattle wrote in a recent medical journal. “The nurse gives the shot, the child suffers the pain of the injections, and, not surprisingly, does not feel better. Later, when the narcotic begins to take effect, the child is not convinced that the injections had anything to do with pain relief.”

To get around the problem, many pediatric pain experts are experimenting with new forms of administering drugs.

In some hospitals, children as young as 4 or 5 are allowed to administer their own painkillers through computerized Patient Control Analgesia, a machine that is attached to a patient’s arm through an intravenous tube and provides pre-measured doses of painkillers at the touch of a button. Because maximum doses are controlled by the computer, overdoses are prevented even when children push the button indiscriminately.

To avoid shots and IVs altogether, researchers also are experimenting with narcotic lollipops. Although considered ideal for small children, it has met fierce opposition from Ralph Nader and other consumer advocates who fear it will lead children into drug addiction--a highly unlikely scenario, according to pain experts. All recent studies show that even the strongest narcotics rarely lead to addiction when used for real pain.

Meanwhile, a number of research hospitals are experimenting with psychological interventions to help children cope better with the stress of pain.

At Johns Hopkins, children are never parted from their parents except when they are asleep. The parents accompany them into the operating room and wait for them to wake up in the recovery room. Although that policy may seem as heretical to some surgeons as the idea of allowing fathers into the delivery room seemed to obstetricians several decades ago, it “will catch on if consumers just demand it,” said Barbara Popper, founder of Children in Hospitals, a Massachusetts-based national organization that has lobbied for 20 years for closer parent-child ties throughout hospitalization.

Psychological preparation can help children cope with painful medical procedures more than tranquilizers such as Valium, a series of studies supported by the National Cancer Institute at USC has shown.

Children who participated were shown films of other children dealing with such procedures as spinal taps and bone marrow aspirations. The children were taught to use their imaginations to distract themselves. They were encouraged, for instance, to pretend they were working for Superman and were being asked to undergo a painful procedure as part of a special medical mission. Those who played along were given trophies for bravery.

Other children were given Valium. Although the study is not yet complete, preliminary results indicate that Valium has almost no effect on children, while psychological interventions almost always reduce distress--in some cases by as much as 50%. The next step, the researchers said, will be to find which interventions work best in various situations.

In studies of children being treated at UCLA for cancer and of healthy children at the Corrine A. Seeds University Elementary School at UCLA, Zeltzer and her colleagues are trying to understand the various ways youngsters respond to pain. Eventually the UCLA researchers hope to be able to predict which children are likely to be better at coping with physical discomfort and which are likely to be more susceptible to the stress of pain and, thus, in need of special intervention.

“Some day I hope ‘pain tests’ will be as much of a part of hospital routine as X-rays and blood tests,” Zeltzer said.