| Alexandra V. Aglieco, APRN, FNP-BC is an actively practicing family nurse practitioner, American Society of Addiction Member, and student of doctoral nursing practice at the University of North Carolina at Chapel Hill. She has 6 years of nursing experience and also works as a graduate teaching assistant at the university level. Alexandra has previously been published in various online and print sources such as Doctors on Social Media, Healthcare IT Today, and the Hartford Courant. |
This is a case study on two girls affected by the pediatric healthcare system, with both stories ending in tragedy. Guest post by Alexandra Aglieco, APRN, FNP-BC.
The diametrically opposed cases of Gypsy Rose Blanchard and Maya Kowalski evokes analysis and comparison of the identification of medical child abuse, the diagnosis of Factitious Disorder Imposed on Another (FDIA); previously known as Munchausen Syndrome by Proxy (MSBP); and how to prevent history from repeating itself.
“The intentional production or feigning of physical or psychological signs or symptoms in another person who is under the individual’s care for the purpose of indirectly assuming the sick role.”
However, due to the secretive nature of this condition, FDIA continues to go widely underdiagnosed and misdiagnosed.
Popularized by recent media attention, Gypsy Rose was abused by her mother, Dee Dee (DD), for years as a victim of FDIA.
As many know, this ultimately led to the murder of DD by Gypsy’s boyfriend, after the two planned the crime together. Gypsy, who has since been released from prison, now says it was her “only hope” to escape the abuse.
Divergently, Maya was diagnosed with complex regional pain syndrome (CPRS) at the age of nine, and subsequently started receiving high doses of ketamine as treatment. This is what initially alarmed the medical professionals taking care of her during her stay at All Children’s Hospital in St. Petersburg, Florida.
Maya’s family was falsely accused of FDIA, and Maya was removed from the custody of her parents while hospitalized for three months, even being prohibited from phone calls. Maya and her family maintain that there was zero medical abuse occurring and went on to win multiple civil suits against All Children’s Hospital.
Gypsy Rose’s case came to light in 2015, attracting a huge public awareness to the FDIA, while Maya’s medical kidnapping occurred in 2017. Could it be that Gypsy’s case influenced the hospital staff at All Children’s, causing a hypervigilance so excessive that they railroaded parents and exaggerated cases to fit this specific diagnosis?
Several compelling parallels exist between these two cases.
Here are some key differences that could have been caught in each that would have prevented the outcome:
For starters, Maya had a singular, clear diagnosis of CRPS.
Gypsy Rose had several, vague diagnoses of various medical conditions spanning several different body systems, with no real link between them. Leukemia, dysphagia, vision and hearing impairments, developmental delay, and epilepsy highlight a few.
Maya had skin lesions, muscular atrophy, and dystonia that was objectively assessed by medical professionals.
Gypsy Rose, in contrast, had no objective signs of disease, as the majority of her symptoms were reported by her mother and never witnessed by healthcare staff.
Maya’s anesthesiologist, Dr. Anthony Kirkpatrick, formally diagnosed Maya with CRPS based on his specialized assessment, which he even filmed for educational purposes. He had Maya’s care transferred to another pain specialist, Dr. Ashraf Hanna, who provided confirmation of appropriate diagnosis and treatment.
Furthermore, both doctors defended the plan of care to hospital staff when it was questioned. Comparatively, Gypsy and DD moved around frequently to several different doctors in different states, repeatedly claiming all medical records were destroyed in Hurricane Katrina, leaving staff to rely solely on the mother’s subjective reports of history.
Dr. Kirkpatrick described the then ten-year-old Maya as “incredibly intelligent, engaged, and curious” during office visits. Maya asked many questions and actively participated during their conversations.
Hospital staff instead considered it a red flag that Maya was so engaged in her care, claiming she had an abnormally advanced understanding of medical knowledge for a child of her age. (This extensive knowledge of medical terminology is a common warning sign of MSBP or FDIA).
Dr. Robert Steele, one of the pediatricians who treated Gypsy at Mercy Children’s Hospital, reported that Gypsy rarely spoke during visits. All communication occurred through DD, even as Gypsy progressed into teenage years. Gypsy later admitted that her mom would squeeze her hand during appointments as a signal for her to stop talking.
Hospital staff at All Children’s frequently invalidated Maya’s objective signs and symptoms. It was documented that Maya’s leg muscle atrophy was due to being forced to be in a wheelchair by her mother. Whereas Gypsy’s neurologist, Dr. Bernardo Flasterstein, noted that despite being wheelchair bound, her legs were not atrophied, and considered this a red flag.
Gypsy was reported by family members to flip a switch when her mom was absent. They describe an instance in which she was jumping on a trampoline, and instantly became a “wet rag” when her mother arrived. Maya demonstrated signs of weakness and dystonia even when she was in her hospital room alone, out from medical staff’s view, as was captured by undisclosed video recording.
Dr. Flasterstein reported that based on normal MRI results, he was able to have Gypsy independently stand up out of the wheelchair, without assistance. In response to this, he reports DD became upset and abruptly left the office, which he found concerning. In Maya’s case, her parents filmed her physical improvements proudly, exemplified by a video of her diving into a pool.
Lastly, Maya’s mother Beata documented everything, recording all phone calls and medical interventions both on paper and on film. She provided clear reports and documentation to medical staff when Maya was hospitalized and requested several times for Dr. Kirkpatrick to be contacted to endorse Maya’s medical history.
Dr. Steele reported that when Gypsy was first brought to Mercy Children’s Hospital, DD reported a history of cancer, but could not report a specific type nor any treatment history.
Dr. Flasterstein reports he found the expression of negative emotions regarding what appeared to be physiological improvements to be a red flag but did not report them because he felt he could not make a report based on a suspicion that he had no proof of. Yet, that is exactly what the staff at All Children’s Hospital did when treating Maya.
We can analyze the children in both cases in the context of the Five-Factor Model (FFM) of personality to gain a better understanding of who they are, why this happened, and how the experiences changed each of them.
Perpetrators of FDIA are almost always mothers with severely maladaptive personalities often involving aspects of the dark personality triad. Their actions are often attention seeking, and they typically have high indications of Neuroticism (N) in their personalities (an increased tendency for negative emotions such as anxiety or anger).
Additionally, they have an element of extraversion which is why they engage in attention seeking behaviors, and often act in a way to garner social interaction and sympathy such as publicizing the victim’s illnesses or disabilities, as DD did by placing Gypsy in the Make A Wish program.
They appear to be lacking Agreeableness (A), as they tend to be less trusting and cooperative with medical advice and instead impose their own thoughts and beliefs about the victim’s medical condition. Perpetrators of FDIA also typically display little (if any) signs of Conscientiousness (C).
DD failed to help her daughter get well from these falsified conditions; but instead, moved her around to many different medical specialists spanning across different states and did not provide any records. Essentially, DD started the process from scratch each time they re-established care.
Interestingly, when examining Beata’s (Maya’s mother) personality, she does not fit the parameters of an FDIA perpetrator in the context of the FFM.
She displayed low levels of Extraversion (E) regarding her daughter’s condition; she kept Maya’s diagnosis under the radar, and did not attempt to gain from it financially in any way; nor did she create any GoFundMe pages and try to campaign on social media for support.
While some may have considered her neurotic and emotionally unstable, it is endorsed by family and friends that this was more a complex trauma response to her daughter being removed from her care, and not her baseline behavior.
However, Beata demonstrated a great deal of Agreeableness (A) to the medical professionals caring for her daughter whom she felt like had Maya’s best interest at heart such as Dr. Kirkpatrick, and even tried to call him for support when she was admitted to the hospital.
Beata was also extremely Conscientious (C) in her personality; she documented every aspect of her daughter’s care by writing and video and kept her records extremely organized. She made sure to bring the records to each doctor Maya went to to ensure continuity of care and kept her medical staff the same as much as possible.
Alexandra shares on her experiences as a medical professional:
What can we as healthcare professionals learn from this? How can we be sure to correctly identify potential medical child abuse, avoiding either of these situations from happening again?
Oftentimes, as I have personally experienced, child protective services will take the report but claim insufficient cause for opening a case. As a family nurse practitioner trained in the care of patients of all ages, one of my duties is to identify signs of abuse and neglect in pediatric patients.
Maya’s case is especially surprising to me, as I have had to make reports to the Florida Department of Children and Families (DCF) several times while working in the state as a family nurse practitioner.
Seeing patients of all ages in an inner-city setting, working with underserved populations, I encountered several pediatric patients who were facing several risk factors.
I can recall days that I had to set aside hours to make a DCF call, waiting on hold only to be told there was no case to be made based on my suspicions.
To think that Maya was literally removed from the care of her parents almost immediately is astonishing when I had patients who I saw for months that I highly suspected were at risk for neglect and abuse but could not get DCF to open a case.
It’s not to blame Florida DCF either, as they are justified in their resistance to open a case for every report, in order to prevent situations like Maya’s from happening.
The key is: assess without bias and report suspicion in a timely manner. It is our duty to actively report any concerns to patient safety we may have, and then it is left up to the child protective services to investigate.
In Gypsy’s case, there was no risk posed to the physicians to make a report and there is no reason it should not have been done. Perhaps the industry needs quality improvement in assessing for, identifying, and reporting abuse.
More training and continuing education as well as a standardization of policy and procedure in healthcare systems could be a potential way to improve this process.
Encouragement of physicians and mid-levels to make reports when suspicions are present by the organization, and increasing support in this process will help eliminate the hesitation and guilt we tend to feel in doing this.
At the same token, we need to assume the best intentions of patients and families. When we assess pain, we take the patient at their word.
It’s one issue to have suspicion and concern, but we have to believe patients’ reports unless we have evidence to think otherwise, as we do with any other objective assessment.
As a profession, we must proceed with caution and astute attention. Let us remember the cases of Gypsy and Maya, and integrate the aspects of each tragedy into our daily practice to improve how we protect and care for children.
References
Barańczuk, U. (2019). The five-factor model of personality and emotion regulation: A meta-analysis. Personality and Individual Differences, 139, 217-227.
Bass, C., & Halligan, P. (2014). Factitious disorders and malingering: challenges for clinical assessment and management. Lancet (London, England), 383(9926), 1422–1432. https://doi.org/10.1016/S0140-6736(13)62186-8.
Carnahan K. & Jha, A. (2023). Factitious disorder. StatPearls.
Day, L., Faust, J., Black, R., Day, D., and Alexander, A. (2017). Personality profiles of factitious disorder imposed by mothers: A comparative analysis. Journal of Child Custody, 14 (2/3): 191–208.
Galli, S., Tatu, L., Bogousslavsky, J., & Aybek, S. (2018). Conversion, Factitious Disorder and Malingering: A Distinct Pattern or a Continuum?. Frontiers of neurology and neuroscience, 42, 72–80. https://doi.org/10.1159/000475699.
Hamilton, J. C., Feldman, M. D., & Janata, J. W. (2009). The A, B, C’s of factitious disorder: a response to Turner. Medscape journal of medicine, 11(1), 27.
Santos, L. (2023, October 10). Tampa doctor who prescribed ketamine treatments for Maya Kowalski testifies in family’s lawsuit against St. Pete hospital. WTSP. Retrieved from https://www.wtsp.com/article/news/local/sarasotacounty/take-care-of-maya-trial/67-e73c12a0-a58a-4154-963b-694ce2646e6b
Smith, J., Diaz, J., & Valiente, A. (2018, January 4). How a young woman forced to used a wheel chair, treated for several illnesses ended up in prison for her mother’s murder. ABC News. Retrieved from https://abcnews.go.com/US/young-wheelchair-bound-woman-treated-illnesses-ended-prison/story?id=52138979.
Steel R. M. (2009). Factitious disorder (Munchausen’s syndrome). The journal of the Royal College of Physicians of Edinburgh, 39(4), 343–347. https://doi.org/10.4997/JRCPE.2009.412.