Pippa is a big girl now, almost 4, so she’s very good on the swing. “Higher! Higher!” she squealed and James McKee, her father, obliged with delight. Then it happened. The nightmare. Pippa sailed through the air like a bird and crash-landed with her right leg underneath her. To avoid hours in the notoriously slow waiting room at the Hospital for Sick Children’s emergency ward in Toronto, McGee and his wife, Amy Nugent, took Pippa to a general hospital nearby. Waiting there more than five hours for an ambulance—because children with serious broken bones in Toronto go to Sick Kids—Pippa would doze off briefly, only to wake screaming. No one was around at the ER desk who could respond to McKee’s pleas for more appropriate medication for his daughter. When the family arrived at Sick Kids, Pippa was immediately made comfortable with the completely necessary pharmacological brew, as she waited until orthopaedic surgeons pinned the fracture in her femur later that day in the operating room.
Pippa was actually extremely lucky. She ended up in one of the best pediatric pain centres in the world. Canada has only seven hospitals with children’s-pain departments to serve the entire country; Manitoba, P.E.I., Newfoundland and the North have none. Despite the fact that this country is one of the world leaders in pediatric pain research, many children in Canada do not live within access of proper pain care. The groundbreaking pediatric pain management program at the renowned IWK Health Centre in Halifax flourishes, its brilliant research included. But if you live in Cape Breton and have a child with chronic pain—regular pain that continues for months and often years—every appointment can mean a long drive to the hospital, overnight stays, time off work and missed school days. These hospital-based clinics provide complete interdisciplinary care at no cost to the family. If the child sees local physio- or massage therapists outside a hospital setting instead, each professional must be paid directly, unless the family has a plan through work. That usually covers only a few appointments, nothing like the costs of regular visits for the long haul. Most families are shocked to discover just how inadequate pain care for children can be.
For almost a century, as professional doctors took over from midwives and female family members in the birthing business, a myth was born that newborns and premature babies don’t feel or remember pain. In the early 1980s, the anaesthesiologist for a premature infant, Jeffrey Lawson, didn’t believe he would feel any pain during open-heart surgery. She provided no pain relief during surgery, just Pavulon, a drug that left him unable to move, but totally conscious. The only good news in this horror story that ended with Jeffrey’s death a few weeks later is that his mother, Jill Lawson, went on a public rampage when she learned the facts of the surgery, and went so far as to get her story published in the medical journal Birth in 1986. The anaesthesiologist “seemed sincerely puzzled as to why I was concerned,” Lawson wrote. A neonatologist explained to her that “babies, unlike adults, don’t go into shock no matter how much agony they suffer.” Lawson argued in her article that anaesthesiologists took advantage of this, coupled with the patient’s inability to complain. “I’m convinced that Jeffrey was paralyzed for the convenience of the surgeon. Once paralyzed, he couldn’t distress the operating team by demonstrating his pain, so they didn’t give it any further thought.” Her story shocked families and professionals alike and significantly vitalized the current wave of research on pain in babies and children.
The most delicate premature babies endure up to 10 painful procedures a day, often while lying constrained in their incubators. Ruth Grunau, a professor of neonatology at the University of British Columbia, has found that the more painful procedures a child endures, the more brain-development and behaviour problems it suffers. Babies soon behave like adults who have chronic pain, and develop an infant form of depression. The problem is that regular opioids can be damaging to infants, and topical anaesthetics don’t always work.
Fortunately, not all solutions involve medication. Celeste Johnston, a nurse specializing in neonatal pain at IWK and a professor emeritus at McGill University, studies “kangaroo care,” a tactic that had mothers keep their premature babies snuggled against them, skin to skin. The strategy was first developed in the ’70s in Colombia, which had a shortage of incubators. Even with children born at as little as 32 weeks’ gestation, mortality rates fell. Johnston’s research showed that premature and term infants held skin to skin, much like a baby kangaroo in its mother’s pouch, show significantly less pain throughout tests and injections. Johnston and her colleagues are currently assessing 16 studies from around the world for the Cochrane Review, the respected medical research journal, proving the benefits of kangaroo care.
Johnston doesn’t forget fathers’ contributions to pain relief, either. In an interview, she describes watching a film clip of a father never breaking eye contact with his little boy, who was in the process of being anaesthetized. He regaled his son with stories about their dog and what would happen if it were let loose in the hospital. The child went under happy and relaxed.
Dr. Christine Chambers, who holds the Canada Research Chair in pain and child health and is a professor of pediatrics and psychology at Dalhousie University in Halifax, was part of a group that generated clinical guidelines for parental behaviour when children experience mild discomfort or severe pain. Despite the instinctive tendency to empathize in rising vocal tones, her research shows that this actually makes the child feel worse. Chambers and her colleagues teach parents to distract a child, even during regular vaccinations. What affects the child’s attitude to future medical procedures isn’t so much the degree of pain a child reports feeling at the time, as it is his memory of the event. If the parents are positive and confident—without actually lying—the child will be less fearful and have less pain.
Nurse Cathy Lewis in Calgary has learned all about the power of distraction on the job. For one or two days a week, she gives vaccinations. Distressed by the unhappiness generated by this straightforward public health work, she thought back to a film about distraction techniques and clowning. Now, with her invisible magic gloves and her captivating routine, kids often don’t realize they have just had a shot—or even two. She’s proud when four-month-old babies laugh after inoculations.
At a surprisingly young age, children can help themselves, too. Celeste Johnson tells the horrifying story of a four-year-old girl who reported everything that had gone on in a procedure when she was so deeply sedated, staff thought she was unconscious. Because of this experience, the little girl hated everything about hospitals. Eventually, she came up with her own way of calming herself down. She worked out that her very own purple boots gave her magic protection. If she wore them to the hospital and kept them on always, she could be invincible. That was the end of hysterical, tearful arrivals. All it took was her imagination and understanding medical staff.
More concrete solutions will take some political will, and financial resources. In an interview, Dr. Mary Lynch, president of the Canadian Pain Society, lamented the fact that only two per cent of children with chronic pain in Canada get the care they need, and argued that will never improve without a national strategy. “There is a perfect parallel in the Canadian strategy for cancer control, based on a 2006 paper that summarized a five-year plan, substantially financed by the government.”
Chronic pain costs Canada $60 billion every year, she says. Those resources can be better deployed. Last spring, Lynch, along with other experts from the Canadian Pain Coalition, blitzed Parliament Hill during the first national pain summit. Rather than emerging with a national plan, they failed to have even one conversation with a Conservative politician. “This federal government has no interest at all in national strategies,” said Lynch. “They could call a task force to put [one in]. That’s what we asked for at the summit. We have a blueprint and would be happy to help them.”
As Lynch sees it, pain is about much more than dollars. “If children don’t receive appropriate care, they miss out on formative years, and pain can wreck their entire lives. That has a major cost to the child, their family and our whole of society.” Any child can tell you: pain really hurts.