Barbara Sass, a 19-year-old teenager, has suffered from club foot, asthma, fibromyalgia, scoliosis, heart conditions, and a variety of mental health issues for most of her life. But it wasn’t until Sass turned 14 that these conditions became more pronounced and her health took a drastic turn for the worse.
In 2012, when Sass was on vacation with her mother and her mother’s caretaker that Sass noticed she was vomiting up small portions of her food. Initially, all three of them put Sass’ symptoms off as a bug or a stomach virus.
But when the vacation was over and Sass returned home, only to have her symptoms worsen, they decided to take her to the hospital.
All three visits, doctors kept telling Sass that she was experiencing “reflux” or “constipation.” Doctors kept accusing her of having a psychological or eating disorder, refusing to examine her otherwise. “Being told it was all made up, or all in my head, was horrible,” she said.
“You can’t stop it even though you're trying every day and you're constantly so close to death. I had to grow up fast because you get no answers from anybody, you just have to keep going,” she explained.
The condition ultimately made Sass feel very aloof from her friends and family because none of them could understand what she was going through. “You feel very alone, like you need someone to talk to but there’s no one there,” Sass described.
Her main source of comfort: a small group of individuals she met online who were also suffering from the same symptoms she was experiencing.
Eight months after her final, unsuccessful hospital visit to diagnose her stomach problems, Sass returned to the doctors to undergo a surgery to fix her club feet. That was when her surgeon noticed that Sass had lost nearly 22 pounds since her last visit.
Sass was kept on as an outpatient at the hospital for about three more months, but her health continued to fluctuate. Even a nasal gastric tube wasn’t able to keep food in her body.
Over the course of the next four years, Sass continued to suffer. Doctors were unable to provide her consistent, good help. She was constantly going in and out of the hospital depending on her health, but as always – her health deteriorated at home and stabilized in the hospital.
There was nothing she could do to keep her kidneys from failing or her weight from falling. Several times, Sass even came close to death from lack of treatment.
It was finally around Christmas 2015 that Sass finally received a diagnosis.
She was suffering from severe gastroparesis, a condition that causes the muscles of the stomach to become paralyzed and evoke nausea and vomiting in the body. Doctors thought they would be able to overcome the condition by giving her a permanent feeding tube – but they were wrong.
Sass’ weight continued to drop and she was forced to enter the hospital, permanently, on November 16, 2016. Doctors had become desperate at this point and inserted a Total Parental Nutrition tube into her chest to provide her with the nutrients she needed.
But in late January 2017, Sass was diagnosed with intestinal failure.
She will have to spend the rest of her life supported by the TPN tube.
It has taken Sass quite some time to accept her fate, but she’s now trying her best to remain hopeful about her future. If she is able to get all the machines and support she needs at home, she won’t have to spend the rest of her life in the hospital.
Currently, Sass has opened a GoFundMe page and is hoping that people will help her bring her back home. You can donate here.
Our hearts go out to Sass and her family. We hope she will be able to go home soon.
