Maria Caprigno says her adolescence was especially brutal, having to navigate her middle school years weighing over 440 pounds. She says she felt ruthlessly hemmed in — socially, emotionally and physically — by her increasing size, which she could not control through exercise or numerous diets.
"I had been told at that point by my pediatrician that the way I was gaining weight every year, I wouldn't see my 18th birthday," she says. "We really thought the obesity was going to kill me."
Caprigno, now 27, is a first-grade teacher at a Boston charter school. She chose to become a mom on her own and gave birth to her second child this month. All of these life experiences were possible, she says, because she got bariatric surgery in 2010, at age 14, when such treatment for young teenagers was largely unheard of.
"I was like, 'If someone's going to be a guinea pig, I'm ready to do it,'" Caprigno recalls. "'Because if I can help anyone else who's suffering the way I have been, it's going to be worth it in the end, and if I get more than four more years out of my life, it's going to be worth it.'"
The surgery she got — a gastric sleeve — helped her lose 150 pounds off her peak weight, meaning Caprigno still lives with obesity but without some of the life-threatening conditions associated with it, including early signs of diabetes.
Today, about 2,000 American adolescents annually get bariatric surgery — the term includes several kinds of procedures done to the digestive track to limit the amount of calories a person can take in. And the American Academy of Pediatrics recently endorsed advanced treatment for severe obesity in kids — including surgery or medication for kids as young as 13.
That move is expected to lead to greater awareness and insurance coverage, making surgical treatment available to more families, so Caprigno's once-novel story is now relevant to many more children. Nationally, about 1 in 5 children in the U.S. has obesity; about 6% have severe obesity.
Caprigno was in grade school when a school nurse shamed her for her size in front of her class during a weigh-in. After that experience, she enlisted her mother in helping her find one of the few doctors in the country willing to perform bariatric operations on children — Evan Nadler at Children's National Hospital in Washington, D.C.
Caprigno says she has had lifelong support from her mother, who also had obesity and first underwent the surgery herself because, as she told Caprigno, "she didn't want to put me through anything she herself hadn't done."
Caprigno turned her pioneering experience into advocacy — speaking on TV shows, doing public presentations and participating in research — speaking up for children and adolescents in need of obesity treatments.
"She's one of the first people to really understand obesity care," Nadler says.
Nadler says that now his workdays are booked solid with adolescent bariatric surgeries, and he advocates treatment at younger ages, because he says acting early can set them up for better, healthier lives.
Risks and stigma make surgery a tough decision for parents
But of course surgery remains controversial. Many parents recoil at the notion of putting children under the knife.
Skeptics like University of California, Los Angeles surgeon Edward Livingston worry that children aren't old enough to understand its lifelong implications. Livingston says he formed this view based on his own limited experience in the 1990s performing the surgery on teenagers.
Only a small percentage of children, he says, are sick enough to require the surgery for dire medical reasons. And, he notes, new medications and others in development can be highly effective. So Livingston advises parents: "Let them wait until they can make their own decision."
Medical complications are also a concern. Shorter-term problems like infection or tearing can prompt hospital readmission for between 5% and 7% of patients within a month of surgery. Long-term effects like malnutrition or weight regain must be managed with extensive dietary and lifestyle changes, including taking daily vitamins.
[Parents have] been taught by society to believe that you do this the right way — the right way is exercise.
Typically surgery is a family's last choice, says Harvard Medical School obesity specialist Fatima Cody Stanford. For example, one boy she met at 13 had very bad liver function from his severe obesity, yet he and his mother "were adamant against any surgical intervention." Instead, they tried medications and exercise for another two years and began considering surgery only when those methods failed.
Stanford says a lot of the resistance comes from stigma, from long-held misconceptions that obesity is a matter of self-control or motivation.
"They've been taught by society to believe that you do this the right way — the right way is exercise," Stanford says.
Parents tend to blame themselves for their child's obesity, and that attitude itself can become a barrier to considering treatment, says Nikki Massie, an advocate on the board of the Obesity Action Coalition, which receives funding from the pharmaceutical and weight-loss industries. Massie got bariatric surgery 15 years ago, when she was 31 and her daughters were in elementary school.
Both her daughters are in their 20s now and struggle with obesity-related health problems. But if bariatric surgery had been available for teens when her daughters were adolescents, she admits she might have rejected surgery for them. She says she knows obesity is driven by factors like genetics or environment that are not in a child's or parent's control — that it is a medical condition. And yet, she says: "I would have judged myself as a parent for it. I would feel like somehow I didn't do what I was supposed to have done to control this in any other way."
And that is where obesity differs from almost every other disease, Massie says: There's lots of judgment and stigma, even around treatment.
Long-term benefits, including for mental health
Thomas Inge, a surgeon at Lurie Children's Hospital of Chicago, works with parents to try to overcome some of these hurdles. Inge is also lead author of a 10-year study of bariatric surgery on teens and emphasizes its promising track record. An upcoming report will show its benefits are durable, he says.
[Obesity] impacted my social life. It impacted my ability to speak out and own who I am.
"You're going to live longer," he argues. "You're going to be healthier and live longer with the surgery than without it."
Also, Inge says treatment also often relieves emotional burdens for kids at a critical period for social development. Often, treatment enables them to participate in activities with peers, which improves mental health.
"Maybe if it's not a societal glass ceiling, it's a glass ceiling in their minds that they can't do something that their peers can do," Inge says. "If I can do something about that, I feel really good about it. And I think that they will enjoy better lives because we've intervened."
A child's mental health is a huge part of the pre-surgical evaluation, which usually lasts at least six months and is lengthier and more involved for teens than adults. Patients must prove they're mature enough to understand and commit to the permanent changes in lifestyle and nutrition necessary after surgery — as well as understand the health consequences of not abiding by those.
Often, children with obesity struggle with bullying, depression or other mental health challenges and must also prove to be emotionally stable enough to handle such big life changes.
For Caprigno, the evaluation process took a year and a half. But the impact was immediate. "In so many ways, I changed as a person very quickly," she says.
In school, she recalls, her weight held her back from exploring her passions. For instance, she'd never dared to join theater groups, despite her love of the musical stage.
"Costumes didn't fit me, and I was afraid to get up onstage," she says. "With my body, I couldn't get enough air into my lungs to really hit the notes I wanted to musically. ... I felt it impacting my ability to feel passion for the things I loved."
After the surgery, not only did her body change, but she also gained new confidence to speak out. One month after surgery, she agreed to appear on CNN to discuss her experiences before and after treatment.
That segment, which aired on Anderson Cooper 360, drew vicious criticism, especially of her parents. But Caprigno says facing that reinforced her convictions about surgery.
"It was me facing a lot of anxieties about acknowledging what I looked like, acknowledging my health and being OK saying, 'Yeah, I have a disease — I have obesity, and I'm doing something to treat it,'" she says.
Caprigno shed tears of joy, she says, when the American Academy of Pediatrics endorsed bariatric surgery for teens this year, because of what it means for children struggling now, as she had.
"If these guidelines had been in place when I was 12, I wouldn't have had to fight so much to live," she says. "It does so much more than just impact their physical health. ... It impacted my social life. It impacted my ability to speak out and own who I am."
The broadcast version of this story was edited by Scott Hensley and the digital version by Carmel Wroth.
Copyright 2023 NPR. To see more, visit https://www.npr.org.
