They are strapped and tubed and stuck and monitored from the inside out and the outside in. They are respirated and medicated. Drops of blood are drawn from a tiny heel and more is transfused through needles inserted into veins as thin as a pencil line. Still another line into the arteries measures oxygen in the blood.
These are the smaller-than-doll-sized premature babies, born too soon to cope with life's minimal requirements -- like, for instance, breathing.
For decades, pediatricians and obstetricians were taught that newborn babies, especially premature babies, had pain pathways too immature to permit them to feel or perceive pain. The issue didn't arise much, though, because until recently very few of the smallest, sickest preemies survived very long.
This has changed radically in the past decade. Medical technology has given these weak, wailing bits of humanity -- an estimated 200,000 a year -- their chance at life. But to do so, the new subspeciality of neonatology has had to transform the first weeks of their lives into a series of surgeries, procedures and life supports, medicines, transfusions and intubations.
Bonding with a parent -- who is yearning, but unable, to cuddle or even touch -- must wait.
Although these parents often wonder if the baby is as pain-wracked as he or she may seem, traditionally they have been reassured by neonatal staffs that "They don't feel pain the way we do," or "They won't remember, even if there is a moment or two of discomfort."
But something few parents realized was that even major surgical procedures were -- and sometimes still are -- performed on premature and sick neonates without benefit of analgesia, which relieves pain, or anesthesia, which removes all sensation. Instead, the infants are immobilized by the use of strong muscle relaxants given with oxygen. Very often the daily procedures in the nurseries are performed with no pain relief either, day after day, week after week.
Earlier this year, a Silver Spring mother discovered, almost inadvertantly and to her horror, that her prematurely born son was awake throughout a major operation that included chest incisions and prying his ribs apart.
"The anesthesiologist paralyzed him with Pavulon, a curare drug that left him unable to move, but totally conscious," Jill Lawson wrote in the June issue of the journal Birth.
Jeffrey, who was born at 26 weeks weighing less than two pounds, died on March 31, six weeks after his surgery at Children's Hospital National Medical Center. Lawson has made her son's experience into something of a crusade against what she sees as inhumane treatment of infants.
"I had some second thoughts about pursuing it," Lawson says, "but I have learned a lot and I know I'm doing the right thing. I think what they're saying is that there's no way to anesthetize very tiny or weak babies so the choice is not doing the surgery or doing it under horrendous circumstances. I'm not saying never do it, but I would want to think long and hard."
The Lawsons are not interested in legal action against anyone involved in Jeffrey's surgery, Jill Lawson says, but simply want the practice of surgery without anesthesia or analgesia publicized and, she hopes, ended. She has written to virtually every pediatrics, surgical, anesthesiological and neonatal professional society and journal she can find. For that reason, none of the physicians involved in the case will discuss it.
The use of Pavulon or other curare-based preparations (along with oxygen) is a time-honored technique for surgery in the newborn, especially the very small and very sick premature babies, says Dr. Gerard W. Ostheimer, an obstetrics anesthesiologist, who is the liaison between the American Society of Anesthesiologists and the Committee on the Fetus and the Newborn of the American Academy of Pediatrics.
"There is precedent for that care going back to the times when we didn't have anything to give these babies because of the simple fact that the anesthetic was as poisonous to the baby as anything else, and therefore you allowed the neonate to have pain so the baby could survive the procedure," Ostheimer says.
But the practice of operating on premies without anesthesia is changing. For one thing, there are better pain relieving drugs and anesthetics available. Also, there is a growing body of scientific literature suggesting that these babies function on a higher level of central nervous system organization than had been previously thought. They may not be able to intellectualize feelings as "pain" or "stress," but they respond physiologically to pain the way older children and adults do -- secreting the same brain chemicals, for example.
"Now we have evolved our practice so that there is method of providing pain relief that will not jeopardize the baby," Ostheimer says. "At the same time, we relieve pain and allow the surgeon to perform the procedure.
"We're seeing more and more pain relief provided for these very sick babies who undergo these procedures. One of the reasons to provide it is the fact that it decreases the infant's stress response" -- the release of steroid and epinephrine-like substances into the bloodstream.
When the stress response is decreased, "the babies do better," he said.
But some physicians, including Dr. Willis McGill, chief of anesthesiology at Children's, are not totally convinced about the safety of the new anesthetics.
*"I would say that when possible for procedures that are painful and of significant duration, an anesthetic should be given," he says. "I do, however, try to assure that the patient is in the best possible condition . . . It doesn't do any good to have a dead patient who doesn't feel pain.
"In the very small preemie, we find many who have immature physiology and we tend to find more patients who are 'tender' to effects of anesthetics. So then we get into some controversial issues" about how best to operate. "In spite of what is seen in the textbooks, virtually none of these agents are perfect in all cases, and we find in some circumstances they are unacceptably depressant to the baby's cardiovascular or respiratory system ."
Nor is McGill convinced on the matter of pain. "I don't know if I have a body of knowledge that tells me if they don't perceive or feel pain or if there are differences from older children and adults .
He noted that some neurologists describe a newborn's response to stimulus as withdrawing in pain. But, he said, that could be a simple reflex. Likewise a baby crying might as easily be reflexive.
"I would imagine that some people would feel, at an emotional level, if babies cry, they're hurting. I'm not sure I can accept that, but I think all of us are becoming more sensitive to the fact that more people feel that way and we'll probably go to greater lengths to avoid becoming entangled in this argument. But I'm not going to be knocking off babies because someone says I'm torturing them. I'm going to do my job the best I know how, and I'm not setting out to be a cruel individual.
"I'll stack my compassion up against anyone else's, and most of my colleagues feel the same way."
Says Ostheimer, who practices at Brigham and Women's Hospital in Boston and teaches at the Harvard Medical School: "We don't really understand how neonates perceive pain, so we have to make the judgment and err on the side of believing that they perceive pain just like you and I.
"We are developing methods and utilizing drugs that maintain cardiovascular stability in these very sick neonates, and therefore the trend in neonatal surgery is to provide at least analgesia."
In her campaign to draw attention to the problem, Jill Lawson has been aided by neonatologist Dr. John W. Scanlon, head of the neonatal intensive care unit at Columbia Hospital for Women, where Jeffrey Lawson was born. Scanlon described the case in a recent issue of Perinatal Press, a journal for which he writes on a regular basis.
The editor of that journal distributed Lawson's letter and Scanlon's column to neonatal intensive care units throughout the country. Scanlon titled his article "Medical Barbarism" and has earned some uneasy criticism from colleagues who would have preferred that this "rapidly evolving" situation, as Ostheimer puts it, had stayed out of the public eye.
Scanlon's high standing in his field, however, has focused professional attention on the topic.
And parents all over the country, in many cases taking their lead from Lawson, are beginning to demand more attention to the pain involved in the day-to-day treatment of their babies in intensive care nurseries. Helen Harrison, author of a book for parents of premature infants, is now coordinating from her California home an informal "network of parents who are concerned about humane neonatal care."
Some physicians and other groups have expressed uneasiness over the increased attention to the question of whether premature infants and fetuses feel pain because the issue may fuel the already charged abortion debate. Harrison notes that "a certain level of neurological maturity is necessary for pain perception, and most abortions take place in the early weeks of pregnancy while the embryo is still in an extremely primitive developmental state.
"But it should be pointed out that many second-trimester abortions in which pain might be a factor" -- and she emphasizes might -- "are performed because devastating problems have been discovered in the fetus. In such circumstances, abortion, even painful abortion, is arguably more humane than allowing the fetus to be born to a lifetime of suffering. If investigations do indicate that younger fetuses also feel pain, then those who perform and receive them must take that into consideration as well."
She says her major focus is "relief for the pain of babies during their months of intensive care. The issue needs study because the methods used to keep these babies alive involves prolonged, often excruciating pain. Yet there is no consensus about when or if pain relief should be provided."
This is of concern to neonatologist Scanlon, too. For instance, he rejects the idea that a preemie's cry is a mere reflex.
"Babies don't scream inconsolably and turn red and have tachycardia rapid heartbeat and rapid respirations and sweat and all sorts of other things you and I would associate with pain and terror when they're hungry," he says. "One can distinguish these cries, too. Our nurses can tell you whether a baby is crying because he is fussy, wet, hungry, in pain or just feels like he wants to yell and holler and get some extra attention." Both Scanlon and Lawson have collected recent papers demonstrating pain reactions in infants. One recent study published in Child Development in June analyzed the cries of 30 normal newborn males undergoing circumcision -- a popular procedure for such studies because it is performed frequently and often without analgesia or anesthesia.
The researchers at Washington University Medical School in St. Louis analyzed the cries by computer and spectrographic analysis. In addition, a group of adult listeners judged them subjectively. By all criteria, they concluded that the cries "do vary with respect to the intensity of painful stimuli."
Other recent papers demonstrate the infant's pain at the "heel stick," the most common way blood is drawn from a premature infant.
Scanlon believes that pain itself may be life-threatening to a fragile neonate, because, for example, a surge of pain-induced adrenalin might reopen a not-quite-healed blood clot.
He is a strong advocate of the use of a local anesthetic even for circumcisions, noting that a technique tested a few years ago at the Washington Hospital Center has been demonstrated to lower stress during the procedure. "Try doing that procedure without an anesthetic on a 250-pound Redskin," he likes to suggest.
Although the debate continues, many in the field still are unsure whether infants feel pain. One is Anita Yaffe, the former head nurse at the neonatal intensive care unit at Hahnemann Hospital in Philadelphia and the mother of a premature son, now 7 weeks old and "starting to coo."
"We always told the parents not to worry, that they don't remember the momentary discomfort, that their pain pathways were too immature," recalls Yaffe, whose son spent the first weeks of his life in her old unit. "Still, when you do something that you might think would hurt, they start screaming. They react. Clearly, they're responding to a stimulus. Who knows?
"But I know one thing. I couldn't watch them do any procedures on my son." Further Reading
"The Premature Baby Book" by Helen Harrison, St. Martin's Press, $15.95. For information and support groups write Harrison at 1144 Sterling Ave., Berkeley, Calif. 94708.
