When 23-year old Madeleine Billings died in her sleep just after Christmas last year, she had been trying to starve herself for almost half her life.
Not that a casual observer might notice. She was an A student in school, played sports, attended college and was “deceivingly healthy looking,” her parents said.
But during that time, she’d also been to about a dozen inpatient and outpatient programs, received therapy and tried medications — anything to get her out of the grips of anorexia nervosa. Nothing worked.
“She was brilliant. But in the end, she was psychotic. I mean, the conversations that I had with her the last week of her life, there was no Maddie there. It was all illness,” her father, Nick Billings, 53, told TODAY.
“That brain was obsessing about Dr. Pepper and whether or not she inadvertently took a sip of regular versus diet. And what did that mean? I talked to her for hours over consecutive days about that topic.”
Her mother, who is a clinical psychologist, saw moments when Maddie seemed to realize how much danger her health was in, only to continue to severely restrict her eating.
“The voices, the eating disorder thoughts she would have that were so cruel and critical to her were so strong that all the behaviors would creep back in and she couldn’t do it,” Lisa Billings, 54, said. “It made me incredibly panicked.”
‘We threw everything we had at it’
The Denver, Colorado, family first noticed something was wrong just before Maddie turned 13. That summer before 8th grade, she’d gone on a bike trip through France with her grandparents in a group that also included a teen girl who had an eating disorder . It made an impression on Maddie, her mom said. Maddie had also taken to heart some light-hearted comments teasing her about her healthy appetite.
That same summer, she also attended a soccer camp and another experience away from home.
“By the time we picked her up from that, she had dropped so much (weight) that she just didn’t look like herself,” Lisa Billings recalled.
Her parents put her in intensive therapy and Maddie bounced back quickly. But as she started high school and faced a challenging schedule of classes, plus field hockey and soccer practice, her eating disorder came back.
Maddie was very good at whatever she did, but she also had significant uncontrolled underlying anxiety, which she managed through her eating disorder, her father said.
“It just started creeping back in and we watched it creep back. There was no denial around this disease at any point. We threw everything we had at it,” he noted.
Nick Billings remembered how stressful ordinary dinners became as Lisa constantly negotiated with Maddie about what she needed to eat. Lisa felt her role was to make sure Maddie received the nutrition she needed, while Nick took care of the couple’s other three kids. It was hard on the family and made it hard to socialize with other families, they recalled.
Maddie looked very normal weight-wise through her adolescent years “because we were doing all the work,” her mom said.
But she later dropped to 76 pounds at one point despite many treatment programs along the way.
“We had her in inpatient. We had her in outpatient. We had her in therapy. We had her on various medications. And it got worse,” Nick Billings said.
“I know conventional treatment, I presume, works for some. It didn’t work for her.”
He called it treatment-resistant anorexia, which some studies have found makes up 10% of patients with the eating disorder. Treatment-resistant patients have more severe depressive symptoms and “endorse more severe eating disorder beliefs,” researchers found.
As a clinical psychologist who did her training at a children’s hospital, Lisa Billings had seen how horribly this illness could go.
Anorexia nervosa can be fatal and has an “extremely high” death rate compared with other mental disorders, according to the National Institute of Mental Health. Patients are at risk of dying from medical complications associated with starvation, it warned. Over time, serious health consequences include heart and brain damage, and multiple organ failure.
Maddie graduated from high school “with an obscenely-high grade point average and a standardized test score that annoyed and impressed many,” her obituary read. She attended Dartmouth College for a short time before transferring to the University of Colorado because she wanted to be closer to home.
When the pandemic lockdowns began, Maddie talked about being lonely a lot, which the family believes exacerbated her disorder. She got much sicker in the last year of her life, her mom said.
“She was the super woman for so long,” Lisa Billings noted. “And then it was like the wheels came off and everything started going wrong… she was just physically a complete mess by the end.”
Maddie’s resting heart rate was so low that when she stood up, she’d sometimes faint, her mom said. Her gastrointestinal system had shut down. The family went to the emergency department three times “really feeling like our child is dying in front of us,” Nick Billings recalled.
Last December, she was on a waiting list at a Denver eating disorder treatment center, but there were no beds available, her parents told NBC News affiliate KUSA.
“She complained the whole day before (she died) about just how exhausted she was and that she was so cold,” her mom told TODAY.
Maddie passed away at home in her sleep on December 30, 2021. Her parents are urging families to pay attention to anorexia warning signs, such as extremely restricted eating and an intense fear of gaining weight, and take them seriously.
“If you’ve got a kid who’s really performing and you find meth, alarm bells go off and you do something. But if you have that same kid and they’re not finishing their meals, or they’re eating only certain things, you kind of push through that and say, ‘Oh, it’s not a big deal,’ Nick Billings said.
“This illness will kill you. It isolates you, starves you and kills you.”