Chapter 3
Upon Rico's transfer to the second hospital's Neonatal Intensive Care Unit (NICU), a notable shift occurred in the documentation process. Instead of facts generated by a NICU doctor, they were documented by a nurse practitioner named Kari Kaczmarek. Kaczmarek filed her report, designated as a "consult," approximately three hours after Rico's birth on December 19, 2012. Curiously, this report underwent a single revision but was not electronically filed into the system until nine days after Rico's birth. This timing coincided with the escalation of signs indicating neurological damage in Rico.
The timing of Kaczmarek's report raises questions about when exactly she wrote it. This inquiry holds significance because the report was not accessible on Rico's first day of life, during which Cheryl and I had begun requesting medical reports. Our request was denied despite our knowledge that these files existed, as evidenced by the constant computer monitoring by doctors and nurses as they entered and exited the room. Instead, we encountered further threats and intimidation. It's perplexing to comprehend how such practices could be considered legal, as they appear to infringe upon a parent's fundamental right to access accurate and transparent medical information about their child.
Upon reflection, the underlying reason for healthcare professionals deliberately withholding immediate access to clinical documents from Lindsey becomes evident. It seems doctors and possibly Mayo legal needed time to adjust the documents in order to align them with Rico's changing medical condition. Of notable importance is that Kaczmarek's report, although timestamped as having been written three hours post-Rico's birth, contained details about the birth absent from the files the individuals directly involved provided. This observation suggests a continuous evolution of these files, resembling a sophisticated form of information modification akin to a high-level form of rumor propagation. The discernible pattern in this situation points to a strategic legal maneuver, seemingly orchestrated to gain control over the narrative and conceal pertinent aspects within the medical records.
Kaczmarek's puzzling nine-day delay in filing her report raises profound questions about the fundamental concepts of "facts," "truth," and "reality," and it casts a shadow of doubt over the integrity of the medical system as a whole. It is genuinely confounding to contemplate why information and diagnoses supposedly observed and documented on a specific day would necessitate such a lengthy gap before being officially filed. While one could entertain the possibility that the initial document contained minor spelling or grammatical errors, which is not uncommon even among diligent record keepers, it still needs to explain the delay in filing adequately. Instead, it prompts a more critical examination of the underlying motive behind this delay, which, beyond trivial errors, presents an opportunity to modify initial information concerning what should have been an unalterable event. It's essential to emphasize that Kaczmarek was absent at the event in question, meaning she was dealing with secondhand information at best. Such a significant discrepancy raises doubts about the reliability and consistency of the medical information provided, raising concerns about the accuracy and transparency of the entirety of all of Rico's medical records.
In retrospect, the nine months leading up to Rico's birth followed a predictable and orderly trajectory akin to a linear system. However, the presence of the wrapped cord and meconium introduced the potential for chaos, challenging the stability of the otherwise ordinary and linear progression. As Rico's shoulders presented during birth, the situation entered a realm of unpredictability akin to the scientific theory of chaos. From that pivotal moment onward, every alteration in the system sent ripples through Rico's intricate biological makeup, setting in motion a cascade of events that would culminate in a significantly divergent outcome. The delicate balance of factors at play in Rico's birth and the subsequent events underscores the dynamic and sensitive nature of life's unfolding complexities, where even seemingly minor variations can yield profound consequences.
The theory of complex systems states that small changes in inputs can significantly affect outputs, which will be highly relevant to Rico's medical case. Due to Rico's sensitivity in the first few minutes of life, the chaos he experienced, and the lack of usable information, it would be difficult to predict the outcome over a short period, let alone an extended one.
The time frames involved in documenting the event - three days and three revisions for the resident, nine days for nurse Kari Kaczmarek's consult, and another nine days for a neurologist to become involved - may initially suggest chaos at play, in line with the theory of chaos. Yet, an intriguing revelation emerged as I delved deeper into the unfolding narrative; patterns and connections emerged in what initially seemed to be random events, giving rise to an underlying rhythm.
A deliberate orchestration of chaos would serve as a cunning tactic to manipulate perceptions and conceal crucial elements that would otherwise shed light on Rico's condition and the sequence of events. The chaos that ensued from a seemingly routine birth had a profound impact on Rico and Lindsey's lives. In just three days, the chaos had spread from the delivery room to the NICU and beyond, eventually landing on the desk of Mayo Clinic and Mower County’s legal departments. The consequences of this chaos would haunt Rico and Lindsey for the rest of their lives. The same chaos may have also enveloped the resident as his superior contemplated what took place over the three days it took for him to file his report electronically; they may have realized that initial statements, frozen in documents that had been electronically filed in a timely fashion by the nurse responsible for the delivery, had become inconvenient. From the nurse who delivered Rico to the doctor who called for him to be taken to the NICU, conflicting information had now begun yet another thread of chaos.
The ripples of what were the first minutes that escalated into a life-long sentence for Rico expanded, and the concept of "critical periods" enters and also alters Rico's development. As Rico's life-long experience of nine months of evolution ended, his brain, like any other infant, became particularly susceptible to the physical changes he was experiencing and his emotional experiences. It is impossible to know what the level of Rico's consciousness would have been by the time his little gurney hit the NICU doors. What is known is that he was not connecting with his mother's loving eyes, and her heartbeat that had forever been present was gone. Instead, Rico will be left to connect with the cold, lonely, glaring fluorescent lights staring down at him. The separation of Rico from Lindsey results in additional trauma, evident from Lindsey's sobbing voice in one hospital to Rico's tightly clenched fists velcroed in place and his toes tightly curled in a downward position in another hospital. The fear and damage that has just been perpetuated into both lives will never relent until both are gone.
Documents indicate that, unfortunately, there was a high level of awareness for Rico despite suffering respiratory distress for the entirety of his life outside the womb. It won't be doctors who reveal they had administered fentanyl several times in the first hours of Rico's life; instead, it will be insurance documents that will show this. Escalating levels of respiratory distress and repeated doses of a drug 50-100 times more potent than morphine (an end-of-life drug) will leave Rico with a "markedly decreased tone" more than six hours after entering the NICU.
Out of the hundreds of documents available, the word "hypoxia" is never used despite the apparent fact that it would be the word used to describe oxygen deprivation during and following his birth. Additionally, "ischemic" would have been the exact term used to describe the restriction of blood flow from the placenta to Rico for an undocumented length of time. Still, like hypoxia, it is never used. Then there is the term encephalopathy, meaning the alteration of the brain's function or structure, which would not be documented until months later. The presence of the three words in the same sentence describes a condition known as hypoxic-ischemic encephalopathy (HIE), which can occur before, during, or after birth.
Upon reaching this juncture, it is imperative to revisit the profound contrast between the initial picture of Lindsey and John cradling Rico for that brief moment following the birth when Rico seems calm and nestled in Lindsey's arms. In the latter photo, Rico's tiny arms are secured to what appears to be a cooling blanket, a high-flow nasal cannula delivers oxygen, wires hint at EEG monitoring to assess brain activity, and a snug cooling cap rests atop his head. This ensemble of interventions points to the implementation of therapeutic hypothermia, a standard treatment for infants facing moderate to severe hypoxic-ischemic encephalopathy (HIE). This therapeutic measure is most effective when administered promptly after hypoxia-ischemia, an oxygen and blood supply deprivation to the brain. The administration of therapeutic hypothermia could also elucidate the use of excessive fentanyl, a potent opioid, aimed at alleviating discomfort and pain experienced by an infant during the hypothermia procedure.
Although the term "hypoxic-ischemic encephalopathy" may not have been explicitly stated during Rico's first 48 hours of life, it is an encompassing descriptor that, again, could carry significant legal implications. Despite its absence from the medical documentation, the consequences and effects associated with HIE will continue to permeate Rico's medical records throughout his entire life. If, in fact, therapeutic hypothermia was not initiated, that in itself could have been the determining factor in what will be Rico's severe decline. Wherever the truth lies, it is a lose-lose situation for both Rico and the doctors who did or did not perform the hypothermia. In unraveling Rico's intricate narrative, the significance of the three words, hypoxic-ischemic encephalopathy, transcends mere medical terminology; they reflect the profound journey Rico, Lindsey, and John endured, shaping their lives in ways beyond measure.
Rico's symptoms of "markedly decreased tone," "feeding problems," "weak cry," and lung dysfunctions meet all the criteria of HIE listed by the Pediatric Brain Center. Although Rico was never diagnosed with HIE, it seems beyond coincidence that the head of the infectious disease, Dr. Huskins, was in contact with the University of California, San Francisco, which houses the Pediatric Brain Center, within the first hours of Rico's life.
There is little doubt that an undocumented EEG was performed to detect seizures in a neonate who suffered perinatal asphyxia. Seizures are often subtle and subclinical and can only be detected by EEG. In a world-class research hospital, an EEG would be standard practice and invaluable in assessing the degree of brain injury and establishing a baseline. However, it is unclear why an EEG was not documented in Rico's medical records, particularly in a research hospital, But maybe that's the point.
Chapter four
The Murder of Hope
In the haunting aftermath of Lindsey's labor, a pivotal moment would unfold as the resident doctor, fresh from practicing on newborns, barged into the room where Lindsey had just given birth. With an alarming intensity, this doctor would launch an assault on Lindsey, targeting the very essence of her being—her blood. As Rico was taking his mind-altering trip on fentanyl in one hospital, Cheryl recalled what was taking place in another hospital.
Cheryl
"A team of doctors surrounded the delivery room. Particularly one young pediatrician, Dr.Dufend[ach] and said, "I heard there is an HIV issue going on with this baby." I nearly fell over. I stood up and said, why do we need to go into this now? No one in the midwife has mentioned HIV in the six months Lindsey has been coming in. Why now?" "Raising my hands and telling [Dufendach] that the HIV issue is not an issue!"
Lindsey and Cheryl's devastation hearing the words "HIV issue" was immediate.
From that fateful juncture onward, Lindsey's life became a battlefield of unrelenting assault, besieged by a diversity of disparagement, threats, and debasing treatment emanating from a cast of characters: physicians, social workers, a judge, county attorneys, and eventually, even Rico's father. Within the contours of this harrowing chronicle, the concept of a metaphorical "murder of hope" emerges as a palpable theme that befalls Lindsey's existence. While the term "murder" conventionally denotes the unlawful extinguishing of life, in this narrative, it transcends its literal confines, penetrating deeper into the profound void she endured, crafted by the plotting of others. The disintegration of Lindsey's hope stands as an eerie tableau, akin to the surreal perspectives encapsulated in Salvador Dali's artworks, where reality bends and fragments into unsettling impressions.
What Lindsey was forced to endure for the love of her child to the point of her death is a deeply disturbing and morally reprehensible act that should indeed be regarded as a form of murder. While it might not manifest in the same physical manner as traditional murder, the psychological and emotional toll that was inflicted on her was just as lethal. Lindsey was systematically subjected to relentless humiliation, degradation, and psychological abuse. Her self-esteem eroded as her mental health deteriorated and her will to live diminished. This not-so-slow insidious process ultimately led to her demise through the physical toll on her body caused by the stress and despair.
In Lindsey's case, it's not just the abuser's actions that result in the victim's death; it's a culmination of the sustained emotional and psychological torture that pushed her to the brink. This prolonged suffering, while not seen by the eyes of society, can be just as cruel and deadly as a physical assault. Society's understanding of murder needs to expand beyond the confines of physical violence. The intentional, systematic degradation of a person that leads to their death should be recognized as an equally heinous crime. It's an affront to our shared humanity and a stark reminder that violence is not limited to the visible wounds we can see but also the invisible scars that can be just as deadly.
Within the shattered remnants of dreams and the enduring ache that engulfed Lindsey's realm, the notion of a "murder of hope" resonates powerfully. As if gazing into a fractured mirror, her perception of existence fractured, leaving her grappling with the altered reality that unfolded relentlessly. This evocative metaphor encapsulates the indelible stain of despair and the tenacious struggle to rekindle purpose and optimism within a labyrinthine expanse of adversities. The underlying query lingers: must murder always be swift and immediate, or can it unfold insidiously over time, eroding the very essence of one's being?
Cheryl's notes…
"During the next 40 minutes, even more doctors and a group of fellows came in wanting to see Lindsey's molluscum. What? How humiliating – my heart went out to Lindsey. Not even being able to hold her new baby – now a spectacle in front of a bunch of -male- strangers. If you think it's funny, you should try it sometime. Even in a research hospital, some things should remain sacred! Things such as privacy!" "After [Dufendach] left, I called Steve, who was in Brownsdale working at the café, and told him the HIV issue came up. Upon hearing my utterance, Steve said, "I'll be there in 40 minutes!"
Dufendach was about to have "a long discussion with the infant's mother and grandmother regarding HIV testing and treatment." The resident delivered his sermon with the power and certainty of a preacher dispensing the religion of a god he had never seen. He stated, "The health of the infant is our primary concern, and we will continue to treat him with the best interest standard." What about Lindsey's primary concerns and her best interest? Do Lindsey's worries and interests cease to exist? Is she no longer human? Then there are the words "standard of care." What do those words really mean, and whose best interests are being guarded?
The phrase "standard of care" holds immense significance in the medical realm regarding children; it's health care -law-. In an ideal world, a normal person would think it signifies a commitment to providing optimal care and safeguarding patients' well-being. However, in Rico's unfortunate situation, the "standard of care" concept took on a different guise, transforming into a legal term wielded with a threatening, legal tone. Instead of embodying the essence of a doctor's education, professionalism, and ethical conduct, it became a tool of manipulation and control when dealing with Lindsey.
Throughout the vast array of documents recounting Lindsey and Rico's journey, the word "law" was conspicuously absent, despite the fact that Mayo Clinic would use the law to enforce what they would claim to be a legal standing to remove Rico from his mother's arms. Instead, doctors employed vague terms like "recommendations" and "guidelines," covertly enforcing imagined laws that had the same repercussions as those authored by elected lawmakers and enacted by courts. The medical community and the so-called legal system well understand this deliberate manipulation of language.
In Rico's case, the phrase "standard of care" was employed to diminish the well-being of the vulnerable infant and his mother, leaving them susceptible to hidden agendas and a quest for legal advantage. The result was a disempowerment of Lindsey and a silencing of her voice, as medical professionals asserted their authority with a sense of finality through the strategic use of these terms.
In this narrative, the essence of the "standard of care" was distorted, betraying its original purpose and causing immense harm. It highlights the need for transparent and ethical medical practices where patients' rights and well-being are prioritized and where genuine communication and patient-centered care should prevail, discouraging the manipulation of language and power dynamics that can lead to dehumanizing effects on the mother and other vulnerable individuals.
Our encounters with the idea of HIV-positive individuals being treated as less than human date back to Lindsey's infancy in 1990. During that time, a child testing positive for HIV was unfortunately regarded as "non-human" by some within the medical community. Shockingly, this perspective is not an isolated incident. In 1973, Dr. Stanley Plotkin, a renowned consultant to vaccine manufacturers, expressed a disturbing belief in justifying experiments on terminally ill individuals, dismissing them as "humans in form but not in social potential." This attitude belittled the quality of life that individuals with HIV could lead. It emphasized the potential gains for the medical community, so let the experiments begin and exaggerate your own "elite potential."
Dr. Huskin would employ these imaginary laws demanding "a definitive answer regarding [Lindsey and Johns] acceptance of this treatment." Those words implied that if, in fact, Lindsey did not accept the use of a black-label drug on her infant son, he would reinstate the threat that he would contact Mower County CPS and file a child protection order. What the family was unaware of was that Mayo Clinic had already started legal proceedings just hours after Rico's birth.
The immediate employment of Mower County becomes a looming question, especially in light of the fact that the family was promised by Mayo legal on the day of Rico's birth that they would not contact the county if Lindsey agreed to the use of AZT, which she did. I was the person who made this agreement with Josh Murphy, who was the lawyer who had walked into Lindsey's room and made the initial threat of taking custody of Rico if she did not agree thereby putting her under duress. The agreement with Murphy is contradicted in two documents filed by social worker Amy Dailey. Once again, the story is further complicated by revisions, electronic signatures, and dates.
Multiple revisions of this single event are evident, with at least four versions on record. I possess two of these revisions, specifically #2 and #4. In revision #4, Dailey explicitly states, "refusal will result in the need for a court order." However, in revision #2, Dailey's statement differs significantly, mentioning that "a child neglect report was filed with Mower County." This divergence in statements is noteworthy. If the family knew that Mayo Clinic had already filed a neglect report, there would be no necessity for an agreement with Murphy. Furthermore, the ominous threat of "refusal will result in" would appear unnecessary if the neglect report had already been filed.
Under "ASSESSMENT (A)," revision #4's initial sentence asserts, "the patient along with the father of the baby expressed strong refusal to proceed with treatment." In stark contrast, revision #2's equivalent line reads, "the patient and family appeared cooperative during the visit. They expressed gratitude for the assistance with lodging and resources," aligning more closely with what transpired during the visit.
In the "PLAN (P)" section of revision #4, Dailey mentions that "Mayo legal will proceed with requesting an emergency court order from Olmsted County." Conversely, revision #2 states, "County authorization obtained for meals and lodging for the patient while the baby is in the NICU," which corresponds more accurately with the actual events.
What adds to the intrigue is that revision #2 was electronically signed into the Mayo System on December 20, while revision #4 was electronically signed the day before, on December 19. The order of electronic signatures appears perplexing, as revision #4 is dated before revision #2. This discrepancy raises questions about the existence of multiple reports that the family has never seen.
Dailey's extensive and perplexing documents provide valuable insights into the initial stages of this complex situation. They reveal that, although certain aspects of the plan may have yet to be meticulously thought out, there was an evolving strategy in place to address potential legal complications. This strategy involved creating an appearance of cooperation with the family under the assumption that Lindsey's agreement to administer AZT would help diffuse the situation. Simultaneously, Mayo Clinic's legal team informed Mower County about the existence of an emergency situation with the intention of fulfilling specific conditions. These conditions, which may have been influenced by potential legal precedents or sanctioned by a concealed ethics review board potentially connected to government agencies, will be explored further in the narrative.
The seeming disorientation in Dailey's portrayal of her role on the day Rico was born may indicate an ever-changing yet carefully planned approach. What may appear as disorientation could be a glimpse into the intricate process of legal maneuvering, as directed by her superiors. Once the decisions about the legal process and the establishment of an emergency status were made, medical professionals began introducing specific legally binding phrases into the narrative. These phrases, such as "potential benefits," "best interests of the child," and "recommendations," were strategically employed to lay the groundwork for Rico's eventual release from his initial NICU stay and played a pivotal role in facilitating what will be the county's intervention.
When Lindsey's own survival as an infant was put forth on the day of Rico's arrival as a solid reason for him not to be placed on AZT, a truth difficult for the elites to dismiss, they instead met the truth with disdain. Dr. Huskins' approach was to view it as an oddity and then label Lindsey as a long-term progressor. Unsettling questions such as "Why was the only child to survive also the only child taken off the AZT?" were labeled a denial. At this point, Cheryl's collection of documents came into play but didn't find its value as being one of the links in this chain of deceit for over a decade.
In a passing paragraph reported in the resident's account of the discussion with Cheryl and Lindsey immediately following Rico's birth, the resident states that Cheryl "was able to obtain [Lindsey's] laboratory records, and [Cheryl's] interpretation of the records is that [Lindsey] never actually had HIV, and the family was lied to." In the resident's following line, he states, "As a result of this experience, the family has been actively involved in an advocacy group that questions the connection between HIV and AIDS." It seems this is the point at which the resident begins his rehearsed narrative or maybe a revision of a previous revision completed at a later date.
The presence of multiple revisions spanning several days, as alluded to in this narrative, emerges as an anomaly that compels scrutiny regarding the accuracy and integrity of the documentation process. These revisions, which will be further explored in Rico's case, suggest that the initial documentation may have lingered awaiting review at a higher echelon of authority, driven by the myriad intricacies unfolding in the forthcoming pages. In the instance of social worker Dailey, the evidence indicates not only the existence of four or more revisions but also hints at the existence of at least two initial drafts. As one delves deeper into the quest to decipher the significance behind the repetitive attempts to craft an account of a singular event, it becomes apparent that the authors may have gradually departed from their original perception of events, venturing into the realms of embellishment or even storytelling on behalf of the legal department.
The term "embellishment" can be applied to the resident's eventual summary of the events on the day of Rico's birth. It’s unclear at which point during the three revisions and three days it took to finalize his account of the birth, or what he deemed necessary to portray as having taken place when he had discussions with Lindsey and Cheryl. When on the day of Rico's birth, Dufendach included the statement that "the family has been actively involved in an advocacy group," it suggests that someone had conducted an in-depth study of the family before that day. This implies that Mayo Clinic would have been aware of Lindsey's HIV status prior to Rico's birth, contrary to their insinuations that they only became aware of it at the moment of Rico's birth, which is one of the founding facts of this story.
The idea of a "premeditated narrative," especially in the context of the resident, arises from what should have been the immediate facts of the situation at 5 a.m. when the resident first connected with Lindsey and Cheryl. It strains credulity to think that Dufendach, as a resident, would initiate a discussion about HIV during his initial encounter when no OB or other doctor had broached this topic in the preceding six months. Furthermore, his embellishment, with a tone that is demeaning and accusatory, claiming that the family is associated with an advocacy group, doesn't believe in HIV and has been deceived by the medical establishment, all while insinuating that this was the first moment of knowledge about Lindsey's HIV status, is equally difficult to accept.
As for the resident's statement that "the family was lied to," this is indeed true. A blood test, which was conducted by Lindsey's doctor at the University of Minnesota close to her 18th month of taking a high and supposedly "tolerable dose" of AZT, did come back negative. However, Dr. Hostetter explicitly stated during our subsequent visit that the test had returned positive. This statement is further corroborated by the -original- documentation that I still possess to this day. Cheryl and I would have remained unaware of this had we not reviewed Lindsey's actual file at the University of Minnesota in 1994, as documented by Cheryl at that time.
Cheryl's notes:
We made a special trip to Minneapolis. The three of us went to the Medical Legal Correspondence Office at the University to look at Lindsey's file. We sat in a private booth, like a restaurant booth, in that office and started sorting through the papers. We did not find the hard copies of the Western Blot tests Dr. Hostetter ordered, but sitting across the table from Steve, I could see him staring at one of the pages… "What's the matter?" "Take a look at this," he said… There in front of me was an oddly striped page that results of blood tests on it. This page showed the result of a culture test, one that had been performed in November 1991 when we first came to see Dr. Hostetter. There plain as day was written the word "NEGATIVE." I suddenly understood why Steve sat and stared at the page. He said, "Am I reading this correctly?" Was this the culture test Dr. Hostetter claimed was positive? The test she based all of Lindsey's treatment on – The gold standard???
We were both shocked. Lindsey was being her active little self, crawling around us and on the tabletop. I will never forget the "aha" moment. We had to gather our wits about us. We felt like spies who had uncovered the biggest secret, a scene that would certainly have been the climax of the entire screenplay! We ripped the page out of the file, sneaked it into our own file, and headed out.
The notion that a doctor could, or even would, intentionally misrepresent a clinical finding goes beyond mere coincidence. The potential implications of this document align seamlessly with the story, taking on the characteristics of a conspiracy. As Cheryl has mentioned, we did indeed remove that page from Lindsey's medical file, and as per Dr. Huskins, it remained missing in 2012. Huskins references this document explicitly, on the same day as Rico's birth, describing a "handwritten copy of laboratory results on a document titled 'University of Minnesota Hospital and Clinic Outpatient Progress Notes.' This document indicates the following results for MS. Nagel...Positive HIV ELISA and Western blot antibody tests in November 1991."
The fact that Huskins was reading from a "handwritten copy of laboratory results" is an implausible happenstance of now not just one but a second renowned facility. Just as it would have been implausible to assign Lindsey her childhood patient number as an expectant mother without recognizing her prior history as their patient, it's equally improbable that major hospitals would rely on exchanging "handwritten copies" of laboratory results. It's also no coincidence that the original file Huskins refers to is currently in my possession.
The 3 chapters I have read so far confirm my suspicion that the hypocratic oath and preventing suffering (much like HIV=AIDS) is a mere theory and inconvenience particularly where personal and professional glory, ambition and success are concerned. The medical community has less than glowing standards and if this is brought to their attention they simply use distraction, obfuscation, intimdation, threats, insults, dishonesty, a wall of silence, or simply go on the offensive. Sadly this is not a mere conspiracy but rather a disgraceful flaw in human nature, integrity and societal standards. I'm sorry Steve that you've had to endure this but please take comfort in the fact that you are not alone.