A Life worth Living?

Many medical professionals argue that children disfigured by massive burns can never live normal lives. UTMB research tends to suggest otherwise.

By Jennifer Reynolds-Sanchez

The curious four-year-old found the matchstick in her mother’s purse while digging for gum. She struck it on the edge of the box and, after watching it burn down toward her fingers, dropped it on her flannel pajamas—this long before federal legislation required that children’s sleepwear be made of fire-retardant fabrics. The nightgown burst into flames. When her mother came back into the house a minute later, she didn’t recognize her little girl: “I just looked so different,” Darla Hansen recalled about thirty-nine years later.

Indeed, Hansen’s physical appearance was altered forever by that harrowing morning in 1966. She suffered disfiguring burns over 85 percent of her body—burns more extensive than any human being previously had survived.

But Hansen did survive and even thrived. Today, she is a physical therapy assistant, a registered nurse, an inspirational speaker, and a country music singer. Sometimes people she meets through her work—those who see her scars and hear about that fateful day—offer their condolences about the accident: “They’ll say, ‘I’m so sorry this happened to you,’” Hansen says. “And I tell them,“‘Don’t be—I’m not sorry.’”

This “no regrets” mindset may seem remarkable, but it’s actually a common attitude among many childhood burn survivors, according to a recent study by researchers at UTMB published last year in the Journal of Burn Care and Rehabilitation.

UTMB psychologists have conducted in-depth interviews with dozens of young adults who suffered severe burns as children. Their data reveal that not only are these people generally happy with their lives, but they, like Hansen, are finding a worthwhile place in society.

Happy to be alive

The findings may help resolve a decades-long argument among medical professionals about whether it is ethical to save and treat someone with severe, disfiguring burns, says Walter J. Meyer III, UTMB psychiatrist and lead author on the study. Meyer works with children at Shriners Burns Hospital in Galveston, where Hansen herself, nearly forty years ago, received months of treatment.

Meyer says during the last twenty years there have been heated debates among surgeons, with some arguing that treatment is no kindness to victims of very severe burns: these patients, the claim goes, will never regain a decent quality of life. And some doctors argue that even if the burn victims recover their physical health, their extreme disfigurement will make it impossible for them to effectively participate in social life—either to find work or to make a meaningful contribution to society.

This debate is especially intense today, as advances in medical technology and research make it possible to save the lives of people with ever more extensive burns. Just twenty-five years ago, only half of the children with burns over greater than 50 percent of their total body surface area (TBSA) survived; today, essentially all of those with such burns live, and doctors give children with burns up to 85 percent TBSA a 50 percent chance of survival.

“Many people have predicted that such survivors will lead lonely, isolated lives, rejected by peers and afraid to enter the mainstream of society,” Meyer says.

But Meyer’s and other UTMB faculty members’ research does not support such bleak assumptions. Studies concerning the childhood burn survivors’ psychological health as young adults—two studies published in 1988 and one in 1998 by Meyer’s colleague at UTMB, Clinical Professor of Surgery Patricia Blakeney—found that 40 to 50 percent of the survivors were “well adjusted,” while 50 to 60 percent exhibited some degree of psychological distress; only 25 percent, the studies concluded, had psychological problems that warranted clinical attention.

Even the most severely burned young adults—those with TBSA of 70 percent or more—gave mostly positive responses regarding their psychological health, although they had more complaints about their physical well-being—such as watery eyes, sensitivity to heat, itchy skin, and discomfort when standing for long periods of time, according to a study published in 2000 in the Journal of the American Medical Association (JAMA). “These complaints are not surprising, since grafted skin is thin and it does not sweat,” Meyer says.”“What is surprising is that the physical discomfort does not keep these people from being happy.”

Behind the statistics

Advances in medical technology and research make it possible to save the lives of people with ever more extensive burns.

Knowing that in spite of their physical discomfort many former burn patients are achieving satisfactory lives, Meyer wondered what, specifically, these burn survivors are doing. Are they finishing high school, going to college, developing meaningful personal relationships, and finding satisfying jobs and careers?

His study provides evidence that many are doing all that and more. Meyer conducted extensive interviews and administered a battery of tests to one hundred and one individuals eighteen to thirty years old who as children had suffered burns covering at least 30 percent of their total body surface area; their average age at the time of the burn incident was seven. Meyer compared the achievements of this group to those of their age mates as calculated by the United States Census and learned that nearly as many burn survivors complete high school and attend college. They also marry at about the same rate.

The study did uncover some problem areas, including reports of psychological complaints among a significant number of women. He found that young women who had been burned were about twice as likely to suffer from anxiety disorders, including phobias, post-traumatic stress disorder, and generalized anxiety disorder, as their non-burned peers. It’s a significant finding, but Meyer is quick to point out that any population of young women is at some risk for these disorders. The message for physicians who treat burned patients is that, at least for girls, reconstructive surgery may be more important than simply reassuring the children that their “internal beauty” is all that matters. “There’s so much pressure on women to be physically beautiful, so they have a harder time coping with disfigurement than men do,” Meyer says.

Hansen recalls learning to cope late in junior high school, when her friends began dating. “I sometimes wondered if they were getting dates because they didn’t have scars,” she says. “I wondered if I would get married and have a family.” Nevertheless, she did marry, remained married for twenty years and gave birth to four children before her recent divorce.

But Hansen says she was always outgoing, unlike some of the girls in Meyer’s study, who tended to either withdraw or to become more aggressive under the sometimes cruel scrutiny of their peers. This tendency to either hide from or to lash out at society is a finding Meyer and his colleagues will give special attention to decoding in future research.

Also deserving further attention is the unsurprising finding—supporting the JAMA study referenced above—that both men and women in the study had more complaints about their physical health than did their non-burned peers. The relatively minor problems, such as itchy eyes and sensitivity to heat, are common among burn survivors. However, Meyer says some of his subjects’ complaints may have warranted further treatment, and giving adults access to such follow-up treatment may be important.

But beyond these problems, Meyer found the burn survivors had generally the same kinds of concerns as their non-burned peers—worries about getting everything done and doing a good job and a general fear of failure. They also had financial worries, such as how to pay for college and how to find a well-paying job. “These types of concerns are very similar to those of any group of young adults, with very few reflecting burn-related issues,” Meyer says.

As for the survivors’ contribution to society, according to Meyer’s latest study, they are entering the work force at nearly the same rate as their peers, with about half in manual labor jobs and half in white-collar jobs. “What’s impressive to me is the range of jobs,” Meyer says. A couple of the men work offshore, one as a foreman on a dredge boat and another doing sandblasting; one man is a logger. Five have entered medically related professions, and twenty-five hold clerical jobs.

“A few have lost parts of their hands, but they are either working around the loss or using an artificial hand so they can do their jobs,” Meyer says.

Common courage

Meyer’s findings may surprise some doctors, who wonder how burn survivors fare so well. But Meyer does not wonder; he says it’s their attitude that makes the difference: “Generally, children don’t dwell on what happened to them,” he says. “They’re more interested in what’s going to happen tomorrow. They ask, ‘What will I be able to do tomorrow that I can’t do today?’”

This is the attitude that carried Hansen toward success, and she credits her family for helping to engender it. When she returned from Shriners to her hometown of Elk Horn, Iowa, in 1966, she says she was not greeted with “you poor thing,” but with “you’re lucky you’re still here.”

A stable home environment like Hansen’s seems to be important for survivors, Meyer says, based on a preliminary review of his data. It also seems that survivors from small towns have an advantage over those from bigger cities or those whose families moved often. Hansen attests that growing up in Elk Horn probably presented fewer chance meetings with strangers, who might be “stunned” by her scars.

“You take what’s happened to you, and you turn it into a positive thing,”

She still lives near her family in Elk Horn, where she works as a physical therapy assistant. Her decision to enter a health profession did not come easily, Hansen says.

“Toward the end of high school, I wasn’t sure what I wanted to do, but I knew I didn’t want to go into a health field,” she says, laughing. “I had had enough of that over the years.”

But eventually she drifted into nursing, then physical therapy, and she decided that helping others work through their own pain was just the right fit for her. Now she gives inspirational speeches and sings with a country music group, traveling for one or two gigs each month.

“You take what’s happened to you, and you turn it into a positive thing,” Hansen says, echoing what Meyer’s data reveals to be a common approach among many childhood burn survivors. “I’ve had the chance to do all kinds of things and meet all kinds of people I wouldn’t have known if I hadn’t been burned,” she says. “I have no regrets.”