The resident had disappeared in the 40 minutes it had taken me to arrive at the hospital. With Lindsey and Cheryl having just been grilled by resident Dufendach, a new doctor had emerged in his place, Dr. Johnson, a more refined and seasoned physician, exuding an air of calculated control. It was as if a shift had occurred, where the overt aggression of Dufendach transformed into a subtler form of manipulation orchestrated by Dr. Johnson. Dr. Johnson artfully danced on the edges of coercion and persuasion in his calculated approach, delicately navigating the fine line between compliance and autonomy.
With an air of concern, he skillfully broached the topic of HIV testing for the newborn, stating he "wanted to clarify with [the family] their thinking on the status of HIV testing for the baby." At first glance, Dr. Johnson's words appeared comforting, an assurance of privacy and transparency. Yet, they served as a catalyst, igniting a spark of recollection within Cheryl's memory, casting light upon a previously overlooked detail. Amidst the chaos of the birth, a peculiar event had transpired—a blood draw from the placenta. This peculiar incident, coupled with the resident doctor's conspicuous fixation on the HIV status of an individual he had never met, overshadowed the urgency of the child's critical condition and the subsequent transfer to another hospital's Neonatal Intensive Care Unit (NICU). The convergence of these fragments of memory, combined with growing threats, cast doubt upon the true intentions concealed beneath the veneer of Dr. Johnson's carefully crafted words.
As I understand it now, a rhythm of deception that has taken years to unveil was well underway in what seems to be an unexplainable riddle of events that had already begun before Rico's birth. The act of drawing blood from the placenta is not an action that would ordinarily be taken, and the fact that it was a resident who took this unusual step adds a layer of complexity.
Ordinarily, it would be unusual for anyone to take such an action unless there was a specific research or diagnostic reason to do so. The only conceivable reason for a resident to perform this task would be if an experienced doctor explicitly instructed or authorized them to do so. Even then, it would be imperative for the mother to be informed about and have previously agreed to the procedure.
Upon reviewing the files that would eventually be accessible to Lindsey, it becomes evident that the blood drawn from the placenta was promptly utilized for an unauthorized HIV rapid test. This revelation contradicted the assurance given by Dr. Johnson that such a test would never be administered "unknowingly" to the patient, raising questions about the true intentions and transparency of the medical team. Due to the blood being drawn from the placenta, it is evident this blood was not only used for an unauthorized HIV test on Rico, but it appears that the doctors utilized the testing to further their agenda of demonizing Lindsey, potentially sending the blood samples out of state for analysis.
The notion of sending the blood samples out of state for analysis is not mere speculation; it is substantiated by the findings in the "HHS Public Access" research titled "Research into a functional cure for HIV neonates." This study suggests that drawing blood samples during labor or shortly after birth might be necessary in research situations similar to Lindsey's. Furthermore, the research indicates that these blood samples would be sent to the AIDS Specimen Bank (ASB), "an established infrastructure with expertise in specimen processing and storage," and has "received >188,000 deposits and has distributed >192,000 specimen aliquots (a portion of a large whole) worldwide."
Bringing unauthorized "research" into Lindsey and Rico's story definitely adds the element of transparency and integrity. While critics may hastily dismiss the notion of research as conspiratorial thinking, the factual evidence points to a more nuanced and intricate reality that the broader story will eventually unveil. It is noteworthy that both the Pediatric Brain Center and the AIDS Specimen Bank are housed within the same UCSF that Dr. Huskins contacted shortly after Rico's birth, raising further questions about the interconnections between these entities and the events that transpired.
Collecting blood from a woman amid labor or in the immediate aftermath of delivery without her informed consent not only brings ethical considerations to the forefront but also exposes a disconcerting path in terms of its intended purpose. Subsequent reports reveal that the blood samples obtained during childbirth were utilized for toxicology screening to identify drugs, which again occurred unbeknownst to Lindsey and without her explicit agreement, a circumstance that could be construed as a type of entrapment.
The unauthorized drug screening yielded results indicating that Lindsey had no controlled or illegal substances in her system, which explains why this crucial piece of information was never disclosed to Lindsey. Instead, it quietly found its way into insurance billing records. One can only surmise that if the tests had shown the presence of illegal substances, it indeed would have been manipulated to further demonize Lindsey by providing what would have been immediate grounds for the doctor to issue a child protection order openly. Such a scenario would have allowed the doctors to obscure their unauthorized testing under the guise of responding to the chaos caused by the alleged substance use. Consequently, the doctors chose not to disclose this exculpatory information to Lindsey, as it would have undermined their actions and potentially revealed the unauthorized testing they had conducted. In the world of imaginary laws, this unacknowledged testing allowed the Mayo Clinic to begin demanding that Rico immediately be put on an entire course of AZT regardless of whether Rico tested positive or negative.
Once doctors are on solid ground with the rapid test, Dr. Johnson will take a softer tone with the delivery of his threats than the resident, stating, "We might need clarification from a legal standpoint. We might contact initially Social Services, but potentially lawyers or a judge could be involved." Had Johnson been truthful, he would have admitted this was not about testing; this was about putting Rico on an entire course of AZT regardless of whether Rico tested positive or negative. It's at this point that Joshua Murphy of Mayo Legal and Mayo Social Services brought on the undocumented strongarmed threats.
The family had just entered a world of imaginary laws where they would be treated as enemy combatants on a battlefield where everyone would die. Lindsey, now facing doctors and lawyers who referred to their demands as mere "recommendations," was cornered by the Mayo doctor's insistent pressure. Joshua Murphy wielded these "recommendations" as a bargaining chip, promising that if Lindsey complied with the testing and administration of drugs, Mayo legal would refrain from involving Mower County child protection. Regrettably, involving Mower County is precisely what Murphy did.
In blatant contradiction to his promise, Joshua Murphy proceeded to "file with Mower County Child Protection on [day of birth] 12/19 for medical neglect," effectively initiating the official involvement of Mower County Child Protection (CPS). As part of their involvement, Mayo Clinic communicated with the NICU social worker, enabling surveillance of Lindsey and her family without their knowledge or consent. This marked the beginning of a meticulous data collection process, whereby information from the family would be distorted, reinterpreted, and seamlessly integrated into the CPS system of Mower County. This orchestrated intervention, veiled under the pretext of "recommendations," had just unfolded into a complex web of surveillance and control.
Unbeknownst to the family, their every move would be under the watchful eye of Social Worker Hannah Mattheisen, who treated the surveillance as just another ordinary day. In her documentation, Mattheisen casually mentions that the case is still in the assessment phase from Child Protection, asserting that there is no requirement for a release of information to communicate with Mower County. However, the family remained blissfully unaware of any such assessment phase, and there had been no legal communication between them and Mower County until the shocking moment when Rico was forcibly taken from their care nearly a month later.
The gravity of the situation began to unfold, painting a disturbing picture of intrusion and violation once the family eventually realized that their privacy had been compromised and their personal information had been surreptitiously accessed. This unauthorized testing and dissemination of confidential medical data will shatter the trust that should have been upheld within the healthcare system, leaving the family grappling with a profound sense of betrayal and vulnerability.
Past the point of giving birth, Lindsey was not Mayo Clinic's patient, and the Clinic was not authorized to do extended testing on Lindsey's blood. Any blood testing that Lindsey consented to after the birth was coerced and explicitly for Rico's blood, as emphasized by Dr. Johnsons' inquiry as to what "their thinking on the status of HIV testing for the baby" was and the mention of "the shortest duration of the AZT" clearly indicate that the testing Lindsey had agreed to was a rapid test, not the comprehensive battery of tests necessary for a medical diagnosis of someone "progressing to AIDS."
Dr. Burgess makes it clear that initially, doctors had, in fact, performed a rapid test as she said it was "not diagnostic for HIV infection and should be considered preliminary." Burgess continues, stating Lindsey "did not have further HIV follow-up. She has not had a recent CD4 count completed and has never had a viral load performed." These tests would have been required to make the soon-to-be claim of Lindsey progressing to AIDS. This raises suspicions that Mayo Clinic either did not adhere to Lindsey's instructions or provided false information to Mower County.
Lindsey's determination had always overcome the relentless HIV issues she had been aware of for most of her life. Despite the inherent questions she would have had from being adopted, Lindsey was also burdened with waking up every day to what must have been varying degrees of feeling cursed by elements of her own body. To carry the load of being diagnosed with not only the plague but the stigma that comes with HIV is a formidable obstacle that would be overwhelming for an experienced mind that no one should have to bear; but the developing mind
of a child, one has to assume that there would have been many lonely nights in bed alone, staring at the transition where the wall meets the ceiling that would bend and saturate the senses. Over the years, doctors and critics would even question the legitimacy of Lindsey's right to have survived and pursued the family with the insatiable desire to make sure Cheryl and I were always aware that Lindsey was going to die.
The diagnosing elites were always eager to predict a bleak future without any hope. When we lost Lindsey, then Rico, and finally Cheryl, these predictions of imminent death felt like a self-fulfilling prophecy. This prophecy, however, did not emanate from divine foresight, but rather, it was forged by the hand of humanity itself, set in motion, and ultimately fulfilled by the very elites who claimed authority over the course of events. Repeated proclamations of an inevitable death brought with it a fate of hopelessness by the repeated claims of the need for a black-label drug as opposed to the potential of resilience. Lindsey would now be burdened by the elite's predetermined verdict, reinforcing the notion that their diagnoses were irrefutable and absolute.
In the face of such a relentless onslaught of pessimism, we grappled with the stark realization that these dire prophecies were crafted by fallible human hands, driven by their own biases, limitations, and preconceived notions. Their words were heavy, and it felt as though we were navigating a labyrinthine web of expectations that led us inexorably toward the very outcome they had anticipated.
As an infant, the doctors were quick to inform us that Lindsey may not survive beyond six months to two years. Dr. Belani, her first doctor, was particularly insistent that the last half of her possible two-year death sentence would be grueling, sickening, and without hope. Dr. Hostetter, her second doctor, reiterated that "AIDS is a fatal disease and that no medical practitioner should display confidence that they can prevent a fatal outcome." Even Lindsey's last AIDS doctor, Dr. Henry, who still works at Mayo Clinic, stated that Lindsey might live to be six or seven but not see double digits. This declaration was made when Lindsey was over three years old and playing on the floor before her.
For 22 years, we had given Lindsey the space to grow and experience life like any other child; there were no exceptions to this. The goal had always been quality of life for Lindsey. With this, she thrived, was independent, and was the only child to have been taken off the drugs, resulting in her being the only child to have survived being treated by the doctors mentioned above. While there was no way to shelter Lindsey from her inner feelings, we were able to shield her from the majority of the incoming morbidity that the anxious critics felt compelled to chant from their elite status, but now, with Rico separated from his mother, we could no longer shield her, and everything good in life including her newborn infant would be taken away not once but many times. Now, the same darkness that has befallen Rico's every attempt to survive encompasses every part of Lindsey's existence while also affirming every negative conjecture that had ever been forced on Lindsey and her mere existence. Every future goal and positive experience that any civilized person would consider as being an acceptable life was gone in an instant.
In the early 90s, Cheryl, with her perceptive wisdom, adeptly chronicled the pressures and challenges that enveloped us as parents. Our journey as parents revolved around shielding Lindsey from the storm of a turbulent world that surrounded her daily.
Cheryl's notes;
We had kept Lindsey's diagnosis a secret from most everyone, including office pals, friends from church, great aunts and uncles, our photographer, and friends from high school. There were lunches and baby showers. It was sometimes very difficult to put on a happy face and have people wanting to see the baby, knowing she was probably going to die in a short time from the deadly HIV virus. And what would they say when they found out they had held onto a baby with such a diagnosis?
Our family lost a good number of friends and relatives that we could have enjoyed being with. Some of our children became acquaintances, not friends. We all lost potential life-enriching experiences, and stability, things that family/friends provide. One person referred to Lindsey as having a "tiger running loose in the house."
Around Christmas time [1993] I wrote a letter to the parents in Lindsey's nursery school class at a new church we had begun attending. The leader of the children's ministry thought it would be a great idea, and backed me up 100%, or I would not have done it. She herself had no problem having Lindsey, now 3, in her Sunday school, and felt the other parents would also be accepting. I wrote that after studying HIV for nearly three years, I could assure them ther was no way their child would contract HIV from Lindsey. Using CDC statistics, I explained that we were the ones taking the risk having Lindsey in Sunday school with their children, as she was the one with a compromised immune system. I wrote, "HIV/AIDS is a controversial medical issue right now and the purpose of this letter is to address the facts as we know them." I noted the 4 ways the CDC notes that HIV is transmitted. Then I closed the letter by telling the parents and staff that if they had any questions or concerns, they should call me, and we could meet for coffee or whatever they felt comfortable with.
Things were going great at Sunday school. I did not think anyone was overly concerned and did not act differently toward Lindsey at all. That is, until February 7, 1994. John Forker had grave concerns. First, he called the toddler's Sunday school class instructor. She referred him to the Sunday school director, whom he called at her home. He told her, "its imperative that I talk to Mrs. Nagel right away." Reluctantly she gave him my number, and he called. (He must have misplaced the letter I gave to all the parents which included my phone number.)
I was not prlepared for such a vicious verbal attack! He told me I was in denial. He tol;d me to give him some facts, but when I did, he talked right over me. I told him I did not expect anyone to believe the same way we did but begged him to at least believe what the United States Center for Disease Control now believes about HIV and how it is transmitted. He kept asking, "What about the 1%?" He was referring to a teeny-weeny percentage where HIV -might- be transmitted. He asked about biting behavior. I told him that saliva would any miniscule amount of HIV that could possibly be in the child's mouth. He said he, "didn't trust doctors as far as he could throw them." Several times I offered to mail him all the material we had gathered with facts about HIV, and how it is transmitted. He would not hear of it.
The conversation abruptly changed when I asked him if he had attended last Sunday's church service. The topic of Pastor Dave's sermon was lepers, (undesirables). The pastor told the congregation that in Bible times if the guard at the city wall spotted a leper approaching, he would holler out, "Behold, a leper!" The pastor was saying that some people still act like this today. I told John that I knew exactly how those lepers felt, and that John was the one hollering out, "Behold, a leper!" It was then that John told me I was getting off the subject. As soon as he said that, I said "Nice talking to you John Gotta go fix my supper." And I added, "My daughter and I will be coming to church every Sunday, so it is up to you what you want to do." Then I hung up the phone! I was shaking, but proud of myself!
Thank you Steve, you write so beautifully and always get to the heart of the matter. I appreciate your courage and honesty.