They remember it like it was yesterday.
Eight years ago, Todd and Deborah Burger of Lexington were experiencing every parent’s worst nightmare: Their child was in the midst of a life-threatening medical crisis and nobody could help.
Today, their daughter is an honors student at Skidmore College, an extraordinary battle with anorexia well behind her. But the Burgers have not forgotten the care team that NSMC assembled to save their daughter’s life and have taken action to support a unique stress reduction program for pre-teen patients as a way of saying thanks.
The Burgers’ story unfolded rapidly over a three-month period. The youngest of their four daughters—whose name they have asked to keep private—went from being a typical 10-year-old who enjoyed ice skating and gymnastics to experiencing the full effects of an eating disorder, prone to mood swings and unable to attend school. During her alarming decline, the Burgers consulted dozens of mental-health specialists and physicians trying to find a decisive diagnosis and appropriate care. Both proved elusive with what turned out to be anorexia, a relatively rare phenomenon among eating disorders in pre-teens.
"We consider ourselves competent parents in terms of researching and finding care for our children,” says Todd, a management consultant and executive at a renewable energy company. “But in this case, we found it nearly impossible to find help no matter where we turned. It was incredibly scary and frustrating.”
The situation went from bad to worse, and late one night the Burgers found themselves sitting in the emergency room of a Boston hospital, their daughter now weighing less than 50 pounds and in serious physical and emotional distress. Unable to provide the care needed, the hospital referred the Burgers to NSMC’s Inpatient Child Psychiatry Service
. That’s where they met Edward Bailey, M.D.,
Chair of Pediatrics at MassGeneral for
Children at North Shore Medical Center, and their daughter’s outlook changed for the better.
With a background in behavioral pediatrics, Dr. Bailey knew immediately that a swift intervention was needed. “I could see that she was medically and emotionally unstable and in a progressive downhill spiral that could lead to a catastrophic outcome,” he says. Dr. Bailey transferred his new patient to the pediatric emergency department at MassGeneral for Children at North Shore Medical Center and quickly pulled together a care team that included Jefferson Prince, M.D.
, Director of Child Psychiatry.
"For any eating disorder,” says Dr. Bailey, “the first step is determining the root cause and then using behavioral programs to get the patient to eat. We provide mental health support and structure along with a slow and deliberate re-feeding. It’s terribly difficult for the patient and his or her family—but it works.”
Uncommon among pre-teens, anorexia is defined by a refusal to maintain minimal body weight within 15 percent of normal weight. It is often accompanied by intense fear of gaining weight, a distorted body image and denial of the seriousness of the illness.
“Within several hours, Dr. Prince had convinced our daughter to sign a contract agreeing to eat and got her to drink some juice that brought her blood sugar to a safer level,” says Deborah. “She tried to renegotiate the contract, but ultimately stuck with the program.” After several weeks in the hospital and gaining significant weight, the Burgers transitioned their daughter to an outpatient eating disorder day program. She was medically stable, but faced a multi-year recovery still ahead.
“When a child develops an eating disorder, it takes the combined efforts of many to nurse them back to health,” says Dr. Prince. “It is important for the family to understand, accept and come to terms with this dangerous disorder. Then the family needs to connect with a team of healthcare professionals, usually including a pediatrician, nutritionist, psychologist and psychiatrist in order to treat all aspects of anorexia.”
Dr. Prince’s continued support, along with the other caregivers he encouraged the family to access, ultimately helped their daughter get to a very healthy place—both physically and emotionally.
To express their gratitude to the team that cared for their daughter, the Burgers have made a significant donation to NSMC’s Mindfulness-Based Stress Reduction program
. Through a series of classes, participants learn how to integrate meditation and yoga into their everyday lives as a way to relieve stress, anxiety and other heath issues. They are funding an expansion of the program for pre-teens. [Call 978-354-2670 for more information about this program.]
“We wanted to give something to NSMC that would both honor Dr. Bailey and Dr. Prince and directly benefit other families struggling with a pre-adolescent child,” says Deborah. “The Mindfulness program seemed like the perfect fit.”