Little Jeffrey Lawson weighed only 1 pound, 11½ ounces. But his tragic death in 1985 after heart surgery without anesthesia triggered a long-overdue uproar over the way doctors viewed pain in babies and children.
In those not-so-old days when Jeffrey was born, as a preemie, many doctors mistakenly believed that babies’ nervous systems were too immature to process pain and that, therefore, babies didn’t feel pain at all.1, 2 Or, doctors rationalized, if babies did somehow feel pain, it was no big deal because they probably wouldn’t remember it. Besides, since nobody knew for sure how dangerous anesthesia drugs might be in tiny babies, doctors figured that if surgery was necessary to save a child’s life, they’d better operate anyway—and comfort themselves with the hope that the child wouldn’t feel pain. As one scientific paper from those days intoned, “Pediatric patients seldom need medication for relief of pain. They tolerate discomfort well.”3
That’s preposterous, obviously. But doctors had to have these self-protective beliefs for their own emotional survival, says Neil Schechter, a pediatric pain physician at Children’s Hospital in Boston. “Doctors were not sure how to do anesthesia in babies. In response, they had to believe that the babies couldn’t feel pain. They were too scared of the anesthetics.”4
“It was a kind of natural denial,” explains his Children’s Hospital colleague, anesthesiologist Charles Berde. “It reduces your own cognitive dissonance to make up a story that there’s no pain. People make up stories to comfort themselves.”5
Comfort was something tiny Jeffrey clearly didn’t get. As soon as Jeffrey was born, according to his mother, Jill Lawson, he was placed in the neonatal intensive care unit. He was put on a respirator but developed lung problems, a moderate brain bleed, as well as kidney and liver problems.6, 7 It soon became clear that something was wrong with his circulation, too.
In the developing fetal heart, there is a duct that connects the pulmonary artery and the aortic arch to allow most of the blood from the right ventricle to bypass the fetus’s compressed lungs. Evolution presumably came up with this solution to protect the right ventricle from having to pump too hard against the high resistance in the lungs. The minute a newborn takes his or her first breath, the lungs open up, resistance drops, and the duct closes up, allowing normal circulation. But in Jeffrey, the duct did not close properly, a not-uncommon occurrence called patent ductus arteriosus. The remedy was surgery.
Jill, a Maryland housewife who had graduated from Penn State at 20 as an anthropology major, remembers being promised that the surgery would be done under anesthesia. It was not—as she and her husband, James, who worked in the bookbinding department of a Smithsonian library, would soon discover to their horror. During the 1½-hour procedure, Jeffrey was given only a paralyzing agent, Pavulon (pancuronium bromide), but no pain relievers, according to his mother. Although he could feel pain, he could not move, cry, or in any way indicate what he was feeling, except, of course, for the stress chemicals pouring into his bloodstream. Doctors cut holes on his neck, and a hole on the right side of his chest, put a catheter in a vein in his neck, and then cut open his chest along his breastbone. His flesh was then lifted up and his ribs pried apart to expose the heart for repair.
When Jeffrey died five weeks after the surgery, Jill, who was facing major surgery herself for a severe kidney infection, obtained his medical records. She remembers standing in the medical records office at the hospital, flipping through Jeffrey’s records. She saw that he had been given the muscle relaxant, but no pain relievers. Stunned, she read on. When Jeffrey’s chest was cut open, his blood pressure, pulse rate, and oxygen requirements all skyrocketed. Unmistakable signs of stress. And pain. Today, more than a quarter century later, she still feels guilt that she allowed this to happen to her son: “Parents are supposed to watch out for their children,” she told me. “This is a very tender subject.”
At the time, while still in shock, she got the anesthesiologist’s name from Jeffrey’s records and called her. “She tried to tell me that they had him on pancuronium. I said, ‘But that has nothing to do with pain.’ There was this silence.” If the rationale for the lack of anesthesia was that Jeffrey was too sick to tolerate anesthesia, she wondered, wasn’t he also too sick to have the surgery? When she finally managed to get a meeting with hospital staff, as she remembers it, one doctor commented that her upset was proof that parents shouldn’t be allowed into the neonatal intensive care unit.
“They disowned it. They placed as much of it as they could on me for making problems. At one point, I was referred to as a ‘poorly managed second-level patient.’ They made the assumption that I was some kind of idiot. I was a housewife, and I didn’t dress all that well. They treated me like I was some kind of low-functioning person.”
Jill, whose writings eventually spurred necessary, though still-insufficient, changes in pediatric pain control, was shocked to discover that, far from being anomalous, undertreatment of pain in babies and children was common practice. It shouldn’t have been. Even back in 1985, scientists, doctors, and nurses could—and should—have known that babies feel pain.
In 1974, Joann Eland became one of the first practitioners to document the undertreatment of children’s pain. Then a nurse at the University of Iowa working on her master’s thesis, she walked around the wards at her Iowa hospital and looked at the medical charts of 25 children aged four to eight who had had all sorts of surgeries—cleft palate repair, repair to the urethral opening at the tip of the penis, and so on.
Over their entire hospital stays, the 25 kids—collectively—got only 24 doses of pain medicine. Of these, only half were opioids (narcotics). Thirteen children received no pain medication at all, despite having had a traumatic amputation of a foot, removal of a neck mass, partial kidney removal, or other serious procedures.
Eland, who now has a PhD and is an associate professor, contrasted that poor pain management for children with what happened with 25 adults who had also had surgeries in the same hospital at the same time. Over their hospital stays, the adults—collectively—got 372 doses of narcotics (opioids) and 299 doses of non-narcotic pain relievers.8
Tragically, Eland’s work didn’t have nearly the impact it should have had across the country. But in her own hospital, her study did change the way kids were treated. Almost 20 years later, researchers again looked at the records of 25 children who had had surgery and found that 23 of 25 had had prescriptions for narcotics, with an average pain treatment of 3.3 doses per day.9
Even back in the early days, Eland wasn’t the only one troubled by undertreatment of children’s pain. In 1982, other researchers documented that children undergoing debridement of burns often got no anesthesia at all.10 (Debridement is a notoriously painful procedure in which dead tissue is peeled off burn sites over and over again to let underlying skin grow and heal.) In 1983, pain researcher Judith E. Beyer of the University of Virginia tracked the use of postoperative anesthesia in 50 children and 50 adults who had had cardiac surgery. Nobody, not even the adults, got very good pain management. But at least the adults actually received 70 percent of the opioids that had been prescribed for them. The kids got only 30 percent.11
That same year, Australian researchers studied 170 children who had just had surgery. They found that 75 percent had inadequate anesthesia.12 In 1986, Schechter compared 90 children and 90 adults undergoing identical surgical procedures—hernias, appendectomies, burns, and fractured femurs—at a variety of hospitals. He, too, found an “enormous disparity” in pain control: Adults got twice as many doses of opioids as children.13
But it took research into the basic neurobiology of brain development to begin to convince the medical world that babies and children did indeed feel pain and should be treated for it. Fortunately, this was a mission that British pain researcher Maria Fitzgerald plunged into with vigor. Fitzgerald began examining how the nervous system in newborn rats—and humans—changes under the assault of severe pain. In 1985, she published the first of a series of pivotal papers in which she tracked the postnatal growth of pain pathways. She showed not only that local analgesics can reduce the risk of subsequent chronic pain, but that untreated pain in infancy can have long-term adverse effects.14, 15, 16, 17, 18, 19, 20, 21, 22 This was a huge revelation. It made unavoidably clear that if pain is inflicted on a preemie or newborn, it changes the developing sensory-neural system in ways that can be long-lasting.
But what really hammered that point home was a blockbuster paper in 1987 in the New England Journal of Medicine. The authors of that paper, pediatric pain specialists K. J. S. Anand, now at the University of Tennessee, and Paul R. Hickey of Children’s Hospital in Boston, laid out irrefutable evidence that babies, and older children as well, do feel pain. Human newborns, they said, “do have the anatomical and functional components required for the perception of painful stimuli.”23 Citing study after study, they made the case that babies’ nervous systems are indeed mature enough to process pain signals, that they react to pain with massive stress hormone release, and that anesthetics can— and should—be given to newborns undergoing surgery.24, 25, 26, 27, 28, 29, 30
In meticulous detail, with more than 200 citations in their New England Journal article, Anand and Hickey showed that newborns have at least as many nociceptive (pain) nerve endings in their skin as adults. Indeed, pain nerves are already developed in some areas of the skin as early as seven weeks’ gestation, fairly early in a woman’s pregnancy. By 20 weeks’ gestation, the fetal brain has the full complement of nerve cells. (A more recent study has shown that by 35–37 weeks of gestation, fetuses can discriminate between mere touch and pain.31)
Anand and Hickey also attacked head-on the argument that newborn babies couldn’t feel pain because some of their nerve fibers are not yet myelinated—that is, not yet covered with a protective, fatty sheath. It is true that without this protective myelin coating, nerves do transmit pain signals slightly more slowly. But in babies, this slower transmission is more than offset by the fact that nerve impulses have much shorter distances to travel from the periphery to the brain, as Anand and Hickey pointed out. Babies, therefore, may be even quicker to feel pain than adults. They also have higher levels than adults of some pain neurotransmitters, such as substance P.
In fact, very young babies may actually be extra sensitive to pain because the descending, top-down pain control signals from the brain to the spinal cord haven’t kicked in yet, observes Celeste Johnston, a nurse-turned-McGill-University-professor.32 At least in rats, it takes 10–12 days after birth for the animals to be neurologically mature enough to activate these descending pathways.33 Even during the birth process itself, it’s clear that babies are actively trying to cope with pain. If the birth is comparatively easy for the baby—a vaginal or Cesarean delivery—newborns pump out three to five times higher levels of endorphins than adults do at rest. But if the newborns have more stressful deliveries—with breech presentation or a vacuum extraction—they show even higher levels of endorphins.34, 35, 36 The babies, in essence, are trying to take care of their own pain.
Not surprisingly, the idea that babies feel pain fed into the debate over circumcision. Even as far back as the early 1970s, it was clear that if a newborn was circumcised without anesthesia, his sleep was disturbed.37 And levels of the stress hormone cortisol rose sharply.38 By contrast, if a newborn is given local anesthetic before circumcision, he does not show behavioral signs of pain and stress.39 But it took decades before it became clear that uncontrolled pain during circumcision can sometimes have lasting effects. That was demonstrated in 1997, when Canadian pharmacologist Anna Taddio studied three groups of baby boys. One group was not circumcised. One group was circumcised after getting a local anesthetic called EMLA. The third group was circumcised after a placebo medication. Four to six months later, the infants were videotaped while they got standard vaccinations. The results were straight-line clear: uncircumcised babies cried the least during vaccinations, those circumcised but with EMLA cried a bit more, and those circumcised with placebo cried the most, strong evidence that EMLA can attenuate circumcision pain.40, 41 (Today, many circumcisions are done with a different kind of anesthesia, a dorsal penile nerve block.)
And it’s not just babies, but older children, too, who may suffer lasting effects from untreated pain. Research suggests that school-age kids with cancer who undergo painful procedures such as bone marrow aspiration or lumbar puncture experience more pain during subsequent procedures if they don’t get good pain control the first time around.42
In recent years, doctors and nurses have learned a lot about treating pain in babies and children, including how to use powerful opioid (narcotic) drugs safely.
Historically, infants and young children have been underdosed with opioids for fear of significant respiratory side effects, California pediatric pain specialists Lonnie Zelter and Elliot Krane noted in a 2011 pediatric textbook.43 But with proper understanding of the way opioids work in young bodies, they say that children can receive effective relief of pain and suffering “with a good margin of safety.”
For instance, it’s been clear for decades that young children who receive good pain management during surgery fare better than those who don’t.44, 45, 46 To be sure, treating babies with opioids can get tricky. Adverse events, both major and minor, following anesthesia are about twice as common in young children as in adults. And the risk is highest, not surprisingly, in the newest, tiniest babies.47 In newborns, the liver is so immature that it takes longer to detoxify drugs. That means that weaning babies off opioids can take longer and must be done with exquisite care so as not to trigger a new bout of pain.48
On the other hand, older children (aged two to six) actually clear drugs faster than adults. But this gets tricky, too, because faster clearance may mean that the child needs a new dose sooner. For example, a sustained-released oral morphine drug that an adult needs to take only twice a day requires three-times-a-day dosing in kids.49 The point, though, is that doctors now know how to manage kids’ pain—and gradual withdrawal from opioids—quite successfully.50, 51
Perhaps surprisingly, kids themselves can be pretty good at it, too. When given the chance, children as young as six can learn how to do patient-controlled analgesia, in which the patient pushes a button to administer a preset infusion of morphine.52 Importantly, letting kids administer their own opioids does not increase drug complications. And many kids prefer this approach to getting repeated intramuscular injections of pain relievers.53 (It’s anxious parents who actually mess things up. They tend to either over- or underdose their children unless they receive a vigorous education program first.)
As for that ever-present concern about opioids—the fear of addiction—there’s no need to go there. Many parents—and doctors—still harbor what California researchers Zeltzer and Krane call an “unrealistic fear of addiction.”54 In reality, research shows that “the rational acute or chronic use of opioids in children does not lead to a predilection or risk of addiction,” unless that child is already at risk by virtue of genetic background and social milieu.55 Even with kids, including teenagers, who do have substance abuse problems, Zeltzer and Krane note, it’s important to emphasize that these young people, too, “are entitled to effective analgesic management, and that often includes the use of opioids.”
For milder pain, non-opioid approaches can often help, including things that taste sweet, breastfeeding, pacifiers, cuddling, skin-to-skin contact, swaddling, and, for older children, self-hypnosis and cognitive-behavior therapy. Take, for instance, the common hospital practice of lancing a newborn’s heel to draw blood for testing. It may look like nothing to an adult, but, as McGill’s Celeste Johnston notes, “size-wise, it’s like a knife in the foot of an adult.”56
And it turns out that Mary Poppins was right: A spoonful of sugar really does help during heel lances and other minor procedures. A number of studies, including a major review of 44 other studies by the Cochrane Collaboration, an international group that analyzes medical research, have found that sucrose significantly reduces the length of time a newborn cries during a heel stick, though it doesn’t stop that initial yelp.57 Sucrose also reduces scores on the Premature Infant Pain Profile (PIPP), a commonly used scale called for measuring infant pain.58, 59, 60 Interestingly, it’s not so clear why.
Sugar may act via opioid receptors. At least one study showed that sugar’s soothing effect can be reversed by a drug called naloxone, which blocks opioids, suggesting that sugar does work through the opioid system. Sugar also doesn’t help babies who are born to mothers dependent on methadone, perhaps because the babies’ opioid receptors are already full and thus unable to be stimulated further.61
But the magic in sugar as a pain reliever may not be attributable to an opioid effect at all. In fact, Britain’s Maria Fitzgerald has shown that sucrose does not seem to act directly on pain circuits in the nervous system.62
Fitzgerald’s team gave sucrose to 20 randomly selected newborns just before heel sticks, but gave sterilized water to 24 other newborns. She tracked brain activity in all of them with EEGs. Surprisingly, there was no difference on the brain tests. But the babies who got sucrose did have significantly better PIPP scores and didn’t grimace as much as those who just got water. So, what’s going on? Probably, it’s that sugar has an emotionally calming effect on babies but is not strictly an analgesic in the sense of acting directly on pain nerves. Even if sugar acts only by blunting a child’s emotional response to pain, that’s still important— and well worth doing. And it may not even be the sugar itself that has a positive effect, says Celeste Johnston. It may be just the sweet taste, because artificial sweeteners work just as well.63
Other extremely benign interventions—especially pacifiers and breastfeeding—have also been shown to help control minor pain, particularly in newborns and tiny infants.64, 65, 66 But perhaps the best infant pain reliever of all is the one that comes most naturally to mothers: “kangaroo mother care,” basic holding and skin-to-skin contact.67, 68 Research shows that skin-to-skin contact is more effective at reducing distress—as gauged by crying, grimacing, and heart rate increase—than swaddling a baby tightly in a crib during heel lance.69 Familiar scents, especially that of the mother, also helps calm babies, as does simply the sound of the mother’s voice.
With all this new knowledge, you might think that undertreatment of children’s pain is a problem solved. Not so. In 1992, McGill’s Johnston interviewed 150 randomly selected hospitalized children aged 4 to 14, and later, their parents, to assess children’s pain experience in the hospital. The results were depressing. More than 87 percent of the children had had pain within the previous 24 hours, and 19 percent of them said their pain was severe. Only 38 percent had received analgesic medication in the previous 24 hours.70
In 2000, San Francisco researchers checked the medical records of hospitalized children who had been reported by nurses to be in pain. They found that opioid use was wildly uneven.71 In 2002, other researchers studied 237 hospitalized children and found that more than 20 percent had significant pain.72 In 2003, a Swedish nationwide survey of nurses and doctors showed that moderate to severe pain occurred in 23 percent of children who had had surgery and in 31 percent of children who had pain from other causes.73 That same year, when researchers from Maine and Massachusetts examined the medical charts of 180 children aged six months to 10 years who were in emergency rooms for fractures or serious burns, they discovered that a whopping 65 percent of kids under 2 got no pain medication at all.74
Researchers from the Netherlands and the University of Arkansas studied 151 preemies and recorded all the potentially painful procedures they were subjected to in their first two weeks in intensive care— an average of 14 per child per day.75 (To be sure, some of the procedures were relatively benign, like suctioning out the airway.) They found that preemptive analgesia was given to fewer than 35 percent of the babies. And 40 percent of the newborns never got any analgesia during their entire ICU stays.
Even today, serious undertreatment of children’s pain persists, according to French pain researcher Ricardo Carbajal. In 2008, his team conducted a six-week study of 430 hospitalized preemies in and around Paris. He found that each preemie received an average of 16 painful or stressful procedures every day, though some of these procedures were minor. A whopping 79.2 percent of the time, the babies got no specific analgesia at all.76 Carbajal himself was shocked. “It seems unbelievable how long it took the medical community to realize that newborns are able to feel pain,” he wrote in a commentary. The problem, he said, is “the large gap that exists between published research results and routine clinical practice.”77
Even in supposedly enlightened Canada, where pain treatment is arguably the best in the world, as recently as 2008, researchers found that only 27 percent of children in a leading hospital—the Hospital for Sick Children in Toronto—had any pain assessment in the preceding 24 hours. This was despite the fact that the children or their caregivers said the children had moderate to severe pain.78
Indeed, many hospitals and doctors still don’t even do the little things to reduce pain, like providing sugar cubes and cuddling. One 2006 Australian study showed that only 23 percent of neonatal units used sucrose or other sweet-tasting solutions during minor procedures. Nor was breastfeeding used to offset pain when newborns were getting shots or having their veins or heels poked. The babies rarely got topical pain relievers, either.79 Many doctors still don’t give children local anesthetic creams like EMLA before injections.80, 81, 82, 83, 84, 85 And many hospitals still do not have pain guidelines for children or attempt to assess infant pain.86
But here’s the real heartbreaker—even children with cancer still die in pain. In 2000, Boston palliative care specialist Joanne Wolfe interviewed the parents of 103 children who had died of cancer between 1990 and 1997. According to the parents, 89 percent of the children suffered “a lot” or “a great deal” in their last month of life.87 Wolfe campaigned for better palliative care for kids, then did a follow-up study in 2007 to see if things had improved. There was some progress. But not enough.88
Ultimately, I believe it will be up to parents, nurses, and the doctors who “get it” to convince those who still don’t that (a) children do feel pain, (b) they can safely get opioids, and (c) little things like sweets and cuddling can relieve minor pain. Recently, a small cadre of doctors, a new group called “ChildKind,” has begun waging a global campaign to combat untreated pain in children.89 But the real pressure will have to come from consumers because doctors already know how to control pain in kids. They just don’t always do it.
It has now been more than a quarter century since little Jeffrey Lawson’s ordeal. Jill Lawson is now in her 60s and a widow. To her credit, she says she has “pretty much come to terms with” Jeffrey’s death. “There’s always a residue with me, the pain and the guilt. I don’t think that’s ever going to go away. But for the most part, it’s okay now.”90
It is fitting that the American Pain Society now presents an annual Jeffrey Lawson Award for Advocacy in Children’s Pain Relief to a leading pediatric pain researcher. It is even more fitting that its first award went to Jill Lawson.