What happened to Maya Kowalski? Horror story behind Netflix’s documentary

“I want people to see that I wasn’t lying, and that other families who are going through similar situations, they’re not lying either,” Maya, now more than halfway through her teens, says in the documentary. “I have CRPS. My mom was not making me sick. I just wish people would believe me.”

Less than ten years ago, the family was fully immersed in the quintessential American dream in Florida. Beata, who had arrived in the United States from Poland as a teenager, wholeheartedly embraced her studies and the American way of life. She not only thrived in nursing school but also excelled in her career. The deep connection between Beata and Jack is palpable as he fondly recalls their initial meeting and the blossoming of their romance. Jack reflects with a touch of nostalgia, describing his wife as nothing short of enchanting.

Maya was born in 2005 and her brother shortly thereafter. Beata doted on the children, working as an infusion nurse and reveling in the comfortable family life she and Jack had built in their sparkling Venice suburb.

When Maya began suffering an array of worrying symptoms in the spring of 2015, Beata applied her nursing knowledge and meticulous nature to the family’s search for answers. Eventually, she sought out Dr Anthony Kirkpatrick, an anesthesiologist and expert in complex regional pain syndrome (CRPS.)

According to the Mayo Clinic, CRPS “is a form of chronic pain that usually affects an arm or a leg” and “typically develops after an injury, a surgery, a stroke or a heart attack.

“The pain is out of proportion to the severity of the initial injury,” the Mayo Clinic site continues. “CRPS is uncommon, and its cause isn’t clearly understood. Treatment is most effective when started early. In such cases, improvement and even remission are possible.”

To explain the rare condition, Dr Kirkpatrick says in Take Care of Maya, “the best way to think about it is the way it evolves.

“Let’s say you have an injury; you know that, probably in a week or two, the pain is going to go down, the swelling is going to go down, the redness and all that is going to go down,” he says. “But what happens in these patients with CRPS is that it actually intensifies over that period of time … The patients describe it primarily as a burning sensation, that their skin becomes exquisitely sensitive to light touch.”

After thoroughly assessing Maya and including segments of his initial evaluation in the documentary, the doctor expressed a heartfelt realization. He conveyed the urgency of the situation, emphasizing the severity of Maya’s symptoms, such as the lesions, the intense burning sensation in her legs, and the pervasive pain throughout her entire body. It became evident to him that Maya was dealing with advanced CRPS, prompting the need for immediate and proactive measures to bring the condition under control.

“We’ve treated over 3000 patients with complex regional pain syndrome,” Dr Kirkpatrick says. “And we know what the best therapy is for. It’s called ketamine.”

Treatments were extreme and required tough choices. Given the severity of Maya’s symptoms, the Kowalskis decided to take her to Mexico for an induced ketamine coma that, while unapproved by the FDA, offered some possibility of relief. It seemed to have a positive effect, and, when the family returned from Mexico, they “couldn’t afford to keep up with Dr Kirkpatrick’s treatments, so he recommended his colleague, Dr [Ashraf] Hanna, who took our insurance and prescribed low dosages of ketamine for Maya,” Jack says in the documentary.

“She was getting stronger,” he says. “The dystonia [bent legs] was straightened out. She was unable to use her legs, but she was using her arms, and she was doing very very well … She went back to school, to laughing and playing. We were just blessed that we were finally seeing something working. And for a year, it did.”

Then — as Hurricane Matthew barreled through Florida in October 2016 — Maya’s symptoms came roaring back with a vengeance. Jack took her to the emergency room at Johns Hopkins All Children’s Hospital.

“Maya relapsed; it came back, and it was very severe,” he says in the documentary. “She started complaining of pain in her tummy, and it got to the point where she was screaming and crying and begging for help.”

Jack contacted Beata, who was at work, and she arrived at All Children’s about an hour after he’d entered triage with their daughter. The medical care team had already been asking questions about Maya’s rare syndrome and even rarer ketamine treatment. When Beata turned up, the situation deteriorated.

Deeply worried about her daughter and fully aware of the treatment she was undergoing, Beata could never have imagined that her efforts to ensure her daughter’s well-being would rapidly escalate into a chaotic storm, tearing apart her family, compromising her own health, and ultimately leading her to contemplate taking her own life.

Beata insisted that Maya needed far higher doses of ketamine to manage her pain — with one healthcare worker calling Beata “belligerent” in a deposition — and the demanding mother raised more eyebrows in the process.

“We were told, if we plan on trying to leave, that security would be called,” Jack Kowalski says in the documentary, and it wasn’t long before child welfare services were contacted by medical staff. When child abuse investigator Sally Smith — a doctor with the Suncoast Center, a company contracted by Pinellas County for its privatised child welfare system — walked into Maya’s room, her father had no idea who the woman was.

“She came in and she acted like a regular doctor that worked for the hospital, and she started to ask questions,” Jack says in the film. “She asked what’s wrong with Maya, where is she being treated, about medications, how could I let somebody give such high dosages, and I told her, ‘That’s what the doctors prescribed.’”

“She did a ten-minute interview at most — and, shortly after she walks out, the nurse walks back in that was helping me. She told me I had to leave — that my daughter is under state custody,” he says, choking up. “I remember looking at my daughter’s eyes, and she’s looking at me. I’m wondering if I would ever see her again.

“They accused her of over-medicating Maya,” he says of Beata. “And they thought Maya was faking this syndrome. At that time, I said we need to get a hold of a lawyer.”

They brought on attorney Debra Salisbury, who also expresses her emotions in interviews for the documentary. Describing Beata as someone who might be “a bit too straightforward at times,” Ms. Salisbury suggests that perhaps some doctors took offense to this. She believes that someone at All Children’s Hospital felt offended, leading to the emergence of a conflict.

Whatever the root cause, the consequences of the “conflict” escalated quickly, exponentially and, upon review years later, almost inexplicably.

“As soon as I was made aware that Sally Smith was investigating, I called her immediately,” Dr Kirkpatrick says in the film. “And I explained to her, ‘This is what the diagnosis is. If you want to see the objective evidence, I’ve got it for you.’ I told her that on the phone.

“She writes a report two days later,” the doctor says. “Does she include that in the report? No … I told her that if she goes forward with this, it would not only be a catastrophic outcome for the child, it would be a permanent injury to the whole family.”

Dr. Smith’s report, along with the accounts of fellow healthcare professionals, played a pivotal role in the court’s decision to deny Maya’s return to her parents’ care. This also extended to preventing Beata from seeing her daughter. Beata, despite her ongoing efforts to oversee Maya’s well-being from a distance, encountered friction with her husband and the system. In poignant recorded conversations featured in the film, her husband earnestly implores her to cease any actions that may provoke.

Maya, in pain and confused, remained at the hospital as child welfare advocates insisted she was being abused, her mother making her sick through Munchausen by proxy. It is described by the American Psychological Association as “a psychological disorder in which caregivers fabricate or intentionally cause symptoms in those they are caring for in order to seek and obtain medical investigation or treatment (i.e., to assume the sick role by proxy).

“Typically, the caregiver is the mother, who behaves as if distressed about her child’s illness and denies knowing what caused it,” APA continues in its definition. “She is believed to be motivated by the hope that she will be seen as an exceptionally attentive parent, and her behavior may be an attempt to arouse sympathy.”

While advocates were suggesting Beata could be facilitating — or Maya could be faking — CRPS, the hospital was billing the insurance company for treatment of the exact same disease being questioned, the Kowalskis’ lawyers claim in Take Care of Maya.

The hospital declined comment to The Independent about this specific allegation, citing “strict patient privacy laws” precluding further information sharing without the Kowalskis’ release of Maya’s medical records.

A hearing was held in December 2016, shortly before Christmas; Maya had written a letter to the judge, begging to see her family for the holiday and outlining how she felt worse and worse. During proceedings, a lawyer for the child asked the judge whether “there was any way … she could just see her mom, just to like hug her mother?”