The Netflix documentary, “Take Care of Maya,” has resonated deeply with audiences, casting a harsh light on the complexities and potential failings within the healthcare system, particularly when it comes to rare and poorly understood conditions. Even before viewing this compelling film, the outline of Maya Kowalski’s story was somewhat familiar, having been highlighted in various media outlets, including a prominent cover story in People magazine in June 2023. However, nothing could have fully prepared for the sheer emotional impact of witnessing the Kowalski family’s ordeal unfold on screen. The documentary is not just heartbreaking; it’s a stark portrayal of the systemic issues and lack of informed understanding surrounding rare, chronic, and often invisible illnesses and pain.
At the heart of this tragedy is Maya, a young girl of just nine years old when initially diagnosed with Complex Regional Pain Syndrome (CRPS) by a specialist renowned in the field. Her suffering was immense, leading her physician to recommend a drastic but ultimately effective treatment: a ketamine coma. While this intervention initially brought relief, Maya’s pain returned with renewed intensity a year later, prompting a visit to Johns Hopkins All Children’s Hospital. It was here that the Kowalski family’s nightmare truly began.
The documentary meticulously details how a medical director at Johns Hopkins unjustly accused Maya’s mother, Beata, of Munchausen Syndrome by Proxy (MSP). This psychological disorder is characterized by a parent, most often the mother, fabricating or inducing illness in their child, particularly in cases involving rare and complex conditions that are challenging to diagnose and verify. Despite Maya’s prior CRPS diagnosis from a respected specialist, Beata was falsely suspected of medically abusing her own daughter. This accusation led to the hospital taking the drastic step of effectively “medically kidnapping” Maya, placing her in state custody and severing her contact with her mother. Beata was restricted to infrequent, supervised phone calls, while Maya’s father, Jack, and brother were allowed only brief, limited visits.
For 87 agonizing days, Maya was held within the system while Beata fought desperately to regain custody and ensure her daughter received the necessary medical treatment for her CRPS. Tragically, the immense pressure and despair led Beata to take her own life. Her suicide was a desperate act, intended to remove the MSP accusation as a barrier and facilitate Maya’s return home and access to treatment. Five days after Beata’s death, Maya was indeed released to her father, but the victory was bittersweet, overshadowed by the irreplaceable loss of her mother, and Maya’s continued battle with CRPS.
“Take Care of Maya” powerfully illustrates a reality faced by many individuals and families grappling with CRPS and other invisible chronic illnesses and pain conditions. The documentary echoes the common experiences of judgment, disbelief, and accusations that the pain is psychological rather than physical. Patients are often met with skepticism, questioned about the severity of their symptoms, and scrutinized for appearing “normal” or managing to perform everyday tasks.
It is crucial to understand that the pain of CRPS is unequivocally real and excruciating. The McGill Pain Scale, a widely recognized tool for pain measurement, ranks CRPS as the most severe form of chronic pain, often referred to as the “suicide disease” due to its debilitating nature. Beata Kowalski’s actions, far from being malicious, were those of a mother fiercely advocating for her child, much like countless parents of children with rare diseases. She was punished for her unwavering dedication to her daughter’s well-being. The documentary forces us to confront difficult questions: What would any parent do in such circumstances? Could Beata have acted differently? And, most importantly, why did this tragedy occur?
The film is replete with disturbing moments, but a recurring theme is Beata’s meticulous documentation of Maya’s illness and treatment. As a registered nurse, Beata understood the importance of record-keeping, a practice often emphasized for those navigating complex, rare, and misunderstood conditions with fluctuating and seemingly illogical symptoms. Her detailed notes and recorded phone conversations, featured in the documentary, paint a troubling picture of manipulative caseworkers and medical professionals seemingly more intent on proving MSP than on providing appropriate care for Maya. These actions actively obstructed the family’s efforts to seek effective treatment and support for young Maya, who was desperately in need of her mother’s presence and advocacy.
In a heart-wrenching scene from the final court hearing before her death, Beata’s simple request to hug Maya was denied. This denial encapsulates the profound cruelty and lack of empathy that permeated the Kowalski’s experience. Maya was robbed of a final physical connection with her mother, a loss that no legal victory can ever rectify.
For individuals like myself, living with CRPS and multiple other medical challenges, the documentary is particularly resonant. The unwavering support of my own mother has been indispensable throughout my diagnosis and ongoing journey. Her love, caregiving, and advocacy have been my bedrock. The actions of the hospital and Dr. Sally Smith, whose false allegations initiated this devastating chain of events, deprived Maya of something irreplaceable: the enduring love and support of her mother. The injustice inflicted upon Maya and her family, and by extension, upon all families facing similar battles with complex illnesses and dismissive medical professionals, is deeply infuriating. Physicians are bound by the Hippocratic Oath to “do no harm,” yet in cases like Maya’s, the system itself seems to inflict profound harm.
Subsequent to Maya’s release and return to her father, her CRPS diagnosis was independently confirmed by another specialist. While reports indicate Maya is improving, CRPS is a chronic condition that she will continue to manage throughout her life. The Kowalski family is now pursuing a $220 million lawsuit against the hospital and other involved parties, with a trial scheduled for September 2023. They have already reached a $2.5 million settlement with the accusing physician.
The deepest condolences and sympathy extend to Maya and the entire Kowalski family. For a more in-depth understanding of Maya’s case, the People magazine article provides further details: https://people.com/take-care-of-maya-munchausen-by-proxy-accusation-maya-kowalski-mom-death-by-suicide-7509016. For comprehensive information on CRPS, please visit rsds.org. If you are experiencing suicidal thoughts, please seek immediate help by contacting the Crisis Text Line at 988 or texting “START” to 741741.
