IN WAKE OF THE KOWALSKI VERDICT
A CALL TO ACTION
The Heartbreaking Story of Maya Kowalski
In July of 2015, Maya Kowalski, then nine years old, suffered from a severe asthma attack and was admitted into Johns Hopkins All Children’s Hospital (JHACH). During her stay, Maya began exhibiting severe pain and weakness. After her hospitalization, Maya experienced several months of increasingly severe symptoms and was seen by a leading independent expert in pain management and anesthesiology. After a full workup, Maya was diagnosed with Chronic Regional Pain Syndrome (CRPS) in September of 2015. This CRPS diagnosis was confirmed by multiple independent experts (“the initial care team”) in anesthesiology, neurology, pain management, and psychology, including multiple JHACH-affiliated doctors.
CRPS is a painful and debilitating condition that causes the brain to process normal nerve root stimuli as excruciating pain. It also causes bone tenderness, stiffness, spasms, limited mobility, and skin lesions.
When other treatments failed to bring relief, Maya’s doctors recommended ketamine-infusion treatment, an FDA-approved treatment that temporarily blocks pain receptors and decreases sensitization. Because of the severity of her pain, her doctors recommended high-dose treatments, which were not available in the U.S. at that time. The family traveled to Mexico for these treatments at the recommendation of their doctors. The treatment was effective, and it temporarily reduced Maya's suffering; however, follow-up booster ketamine treatments were necessary under the care of Maya’s treating doctors back home to maintain her pain-free state.
Maya Kowalski receiving treatments & with her mother, Beata Kowalski
In March 2016, upon the request of members of the initial team, JHACH evaluated Maya and independently determined that she needed a surgically implanted port to assist with her treatment. With the port in place, she was able to continue ketamine treatments, IVIG, and specialized physical therapy. In May 2016, a JHACH pulmonologist sent a note to Maya’s pediatrician noting that Maya had improved significantly while undergoing these ketamine treatments.
On October 7, 2016, Maya's father, Jack Kowalski, brought Maya to the JHACH emergency room for abdominal pain and vomiting. The JHACH Pain Management Team, unfamiliar with CRPS, questioned Maya’s treatment plan and recommended that she participate in a physical therapy and psychology program for children with chronic pain. When Maya’s mother, Beata Kowalski, disagreed with their alternate plan, the JHACH Pain Management Team called the Florida Child Abuse Hotline, alleging that Beata was “interfering with” Maya’s “treatment,” stating that Beata had “mental issues,” and claiming that Beata was “overmedicalizing” her daughter.
A Department of Children and Families (DCF) Child Protection Team (CPT) Investigator immediately contacted one of Maya’s lead treating physicians overseeing her treatment for CRPS, who confirmed that Maya did indeed have CRPS. This doctor confirmed that the mother's requests for higher doses of ketamine administration were indeed necessary for Maya’s care, and were medically recommended for her treatment.
The child abuse hotline call was screened out, the DCF investigation was closed that same day, and DCF promptly notified JHACH that its investigation had been concluded.
The next day, October 8, 2016, the Kowalskis requested that JHACH discharge Maya so that she could be treated by doctors familiar with CRPS. Instead of allowing this discharge, however, JHACH staff immediately contacted hospital security and its Risk Management Team, who jointly decided that any such discharge would be against (its own) "medical advice.” JHACH then called child abuse pediatrician Dr. Sally Smith, who was the medical director for the Pinellas County Child Protective Services team and regularly worked on child abuse cases that were pending at JHACH.
Dr. Sally Smith provided the hospital with specific information and advice as to how to keep Maya at the hospital absent a court order and how to isolate Maya from her family.
Based on the limited information from the JHACH Pain Management Team, without support from any mental health provider, and without possessing psychiatry or psychology credentials, Smith further “diagnosed” Beata as a perpetrator of child abuse due to Munchausen’s Syndrome by Proxy, a highly controversial psychiatric diagnosis that presumes a parent is inducing a child’s symptoms to get attention. She also diagnosed Maya as a psychiatric patient suffering from “conversion disorder.” Smith did not consult with Maya’s initial care team or other treaters outside of the Pain Management Team in making these conclusion, nor did she rely on any psychological assessments of Maya or Beata.
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Dr. Sally Smith worked in conjunction with child protective services authorities to keep Maya separated from her parents.
On October 9, 2016, Maya's parents once again requested that JHACH discharge Maya so that they could transfer her to another hospital. This request was again denied. The hospital’s reason for denying discharge (which was not revealed to the family) was that Dr. Smith was working with the Child Protective Services (CPS) authorities and attempting to secure a court order to "shelter" Maya from her parents.
Once armed with Dr. Smith's opinion that Beata was a suspected child abuse perpetrator due to Munchausen’s Syndrome by Proxy, JHACH called DCF's Florida Child Abuse Hotline a second time, instigating yet another investigation at the same time that Maya’s parents were actively requesting Maya’s discharge. Dr. Smith also began the process of isolating Maya from her parents while she remained in JHACH care.
Even though JHACH itself had earlier prescribed at-home IV infusions and implanted a surgical port for her ketamine treatment, Dr. Smith interpreted these interventions as further grounds for leveling accusations of child abuse against Beata Kowalski. While internal JHACH records from March, May, and August of 2016 noted that Maya had CRPS, JHACH records at this point suddenly shifted to showing conclusions that Maya was not in pain and that her ketamine treatments were life-threatening.
During the period following the second hotline call, Maya’s primary treating physician, a leading expert on CRPS, spoke with Dr. Smith and urged her to desist in her accusations against Maya’s parents, specifically Beata Kowalski. Instead of considering the medical opinion of the primary treating doctor, however, Dr. Smith hid this information and continued to press her accusations against the family.
Note: Section 8 outlines an extensive list of medical ethics requirements which are all implicated by this conduct: 1.1.3 9(b) (g) (h) (i), 1.1.7 (e) (f), 1.2.3 (b), 1.2.6 (a), 2.1.3, 2.2.1 (h), 8.6 (a) (b) (c) (d) (h) (j) (k), 9.2.6, and 9.7.1 (e) (g) (i) (h).
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Maya, Jack, Beata & Kyle Kowalski
Jack and Beata Kowalski continued to request Maya’s discharge from JHACH, unaware of the behind-the-scenes preparation of legal charges against them to remove Maya from their lawful custody (which they still maintained. Absent a court order, the Kowalskis had the right to direct where their child would be cared for and bring her home or to consult with other doctors of their choosing. The hospital continued to refuse their requests.
During Maya’s stay at JHACH, Smith presented herself to the Kowalskis as a regular member of the hospital staff and Maya’s care team. She never told the family that she had a leading role—on behalf of the State—in the investigation of alleged child abuse. Members of the Kowalski family later stated, “If we would’ve known who she was, we never would’ve spoken to her.”
The State of Florida took emergency protective custody of Maya on the afternoon of October 13, 2016, and a shelter care (temporary custody) petition was filed with the local court that hears petitions to legally deprive parents of custody and decision-making authority for their children. The court entered a shelter care (temporary custody) order on October 14, 2016, and designated JHACH as the “shelter location” for Maya. For at least three days prior to the entry of this order, however, Maya was imprisoned at JHACH without legal authority to hold her. The hospital had refused to discharge Maya to her legal custodians (her parents) based solely on the child abuse opinion of Dr. Smith.
For three months, Maya remained in the hospital alone. Her mental and physical conditions deteriorated significantly in state legal custody, committed to the care of JHACH. Contact with her mother was prohibited. Maya endured an excruciatingly painful CRPS flare-up from the stress induced by her circumstances, but the hospital denied her previously prescribed CRPS treatments. She was also subjected to physical therapies that have been described as “akin to torture” for patients with CRPS.
As the Kowalski court found in its denial of JHACH’s post-trial motions, evidence showed that, as a result of JHACH’s pain management teams’ therapies, Maya experienced “Pain more intense than childbirth. Pain more intense than kidney stones. Pain more intense than amputating one’s limb."
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Maya Kowalski during court proceedings
The post-trial motions went further into detail regarding the pain Maya experienced, calling it "the worse pain imaginable, the degree and intensity which most of us cannot comprehend. Pain so intolerable that the condition is nicknamed the “suicide disease.” (Read the full Jan. 16, 2024 order on Post Trial Motions).
Denied even the most modest of contacts with her child through the efforts of Smith and JHACH—all predicated on the conclusion that Beata had abused her child and fabricated Maya's reported pain—Beata was overcome with depression.
After 87 days of no contact with her daughter, Beata Kowalski committed suicide on January 7, 2017.
Maya was finally released to her grieving father’s custody on January 13, 2017, a week after her mother’s death. The court also allowed Maya to travel to Rhode Island to be examined by one of the country’s leading experts in complex pediatric pain. This pain anesthesiologist reported to the court that Maya had Complex Regional Pain Syndrome as well as a high suspicion of Ehlers Danlos Syndrome, and he recommended further genetic testing.