Dec 1., 2015
I am writing this open letter to let everybody know that our daughter, Lindsey has passed away.
She was 24 years old, and leaves behind her son Rico Martinez Nagel, who will be 3 in December. The cause of death was a bacterial infection.
Lindsey first became ill with PCP pneumonia in the fall of 2013, after a year of almost inconceivable stress. Many of you have followed our story, here. The end result of the heroic measures taken by an army of doctors, social workers, Mower Country Child Protective Services, and even the Sheriff of our small Minnesota town, to “save” Rico’s life, left him motherless, and unable to walk, talk, or even sit up, due to all the drugs they gave him as an infant.
We ask that no war for or against ARV drugs break out over our daughter’s tragic story but rather, a renewed commitment to end the obscene violence that our daughter had to endure in her short life, due to the branding on her forehead of an “H.” Lindsey herself did go on ARV drugs to try to get better. Instead they caused a ferocious diarrhea. The spiral was not reversible, especially when she lost her will to live.
We honestly do not know what it was that caused Lindsey’s health to fail– to disintegrate in front of our eyes. We may never know.
We have been in silence for a period of time, due to overwhelming grief, but have now found the strength to tell the full story, here, which we feel is vital to share, in detail:
Most of you know that in 1990, we adopted Lindsey in Romania. We met her when she was only 2 weeks old, and brought her home to Minnesota, where she was given a battery of tests that were routinely performed on all international adopted babies. It was then, in January of 1991 that our pediatrician told us Lindsey tested positive for HIV, and she was given only a 20% chance of living to be age 2. Our pediatrician referred us to Dr. Kiran Belani, a pediatric infectious disease doctor at Children’s Hospital. She ordered AZT for Lindsey. The day we picked up the prescription intended to “save Lindsey’s life,” we sat on the floor of the pharmacy and eagerly gave her the first dose.
Dr. Belani had a poor bedside manner, and after 7 months of sloppy care, we asked our pediatrician if there was someone else we could go to. He referred us to Dr. Margaret Hostetter, at the U of M, who continued the same type of drug treatment.
On AZT, Lindsey developed severe leg cramps, and would awaken nearly every night, screaming in pain. Over the next few months, as the dosages of AZT increased, so did her pain and the number of times she awoke. We contacted Dr. Hostetter, and she said, “This is what you can expect as the HIV progresses.” The dosages of AZT continued to increase. We were getting upset at the idea of actually losing our precious little girl, a girl everybody loved – she was so special.
By this time I had read the book, In The Absence of Angels, by Elizabeth Glaser, wife of Paul Glaser, who starred in the popular TV show Starsky and Hutch. I realized Lindsey was in fact experiencing the same side effects from the drug that both Elizabeth Glaser and her daughter experienced. Glaser writes about the horrible side effects of AZT, yet continued taking it, and eventually died from it. Before her death, she founded the Pediatric AIDS Foundation, which was established to find drugs for HIV+ children. We found out several months later that Dr. Hostetter HAD to know about the deaths of Elizabeth and her daughter, because she was on the board of directors at Pediatric AIDS Foundation.
There was another disturbing coincidence. Lindsey was beginning to flat-line on her weight gain, and we were distressed about her growth chart. Again, Dr. Hostetter made reference to this being a result of “the disease.” At the U of M medical library, however, I found a study about children born in Romanian and eastern European orphanages which concluded that they lagged behind their American counterparts in weight and height. We were startled to find out that Dr. Hostetter was one of the lead investigators of this study.
In August, 1992, prior to the deterioration of Lindsey’s health, my dad gave us an article written by Tom Bethell in The National Review. It was all about Dr. Peter Duesberg, a molecular and cell biologist, with tenure at Berkeley, CA. At age 49, Duesberg had been elected to the prestigious National Academy of Sciences. He received an Outstanding Investigator Grant (OIG) from the National Institutes of Health (NIH) in 1986, (an award just short of a Nobel prize), and from 1986 to 1987 was a Fogarty Scholar-in-Residence at the NIH laboratories in Bethesda, Maryland. Duesberg claimed that HIV did not cause AIDS, and that AIDS was primarily caused by heavy recreational and prescription drug use, including the drug AZT – the drug we were giving Lindsey! At the time, we dismissed the article as unscientific, and told Dad he was a grandfather with wishful thinking.
In October 1992, when Lindsey started having the leg cramps, we were forced to reconsider everything. Everything was up for grabs at that point. We wrote to Duesberg for advice, and he wrote right back, letting us know that if Lindsey were his daughter, he would take her off the AZT, “or she will die like Kimberly Bergalis.” So, Steve and I, feeling that we could not let Lindsey go on suffering, took her off the AZT. It was scary. We were taking a risk, but we could see she was losing ground. She was dying. We’d read about other Minnesota children in the newspapers, and heard their stories on TV. They were featured as “brave” and the photos of them were jarring, as they lay in hospital rooms with tubes in their arms, wearing oxygen masks, looking listless, and obviously dying. In a later interview, in 2005, Dr. Belani stated that, “There was nothing you could do years ago. Most children back then did not live past 7 to 12 years old. And it was hard; these were children that you got attached to. It was really hard. All we could do was provide some supportive care and treat their opportunistic infections. We had many deaths, 10 to 12 in 1994. Now people are living longer, even the kids who are seriously ill.” (In the early 90s there were only 20-25 children 0-12 years old, with HIV or AIDS, according to MN Dept of Health)
Our decision was well-founded, it appeared, when the leg cramps and waking up at night stopped after just three nights. It was actually shocking. We called Dr. Duesberg to let him know about the incredible turn of events! We called Tom Bethell to thank him for writing the article. We did NOT tell Dr. Hostetter. Eventually, of course, we had to tell her and as soon as she found out we’d taken Lindsey off the AZT, she threatened to have her removed from our home. On New Year’s Eve, at 6PM, she called and said, “There are families who would love to take care of Lindsey.”
January 2, we called our attorney, and he told us to find Lindsey a different doctor, one who would not make us give Lindsey AZT. He said as long as Lindsey was being cared for by a qualified doctor, we would have a medical umbrella, and she would remain in our care. His actual words were, “If Lindsey were my daughter, I’d take her to the Mayo Clinic, set her on the floor in front of a doctor there, and say, “What would you do? This child is entirely asymptomatic, has normal lab results, and we do not want her on AZT.”
After making at least 10 phone calls to doctors in Minneapolis, we ended up doing exactly what our attorney recommended – we took Lindsey to the Mayo Clinic. Steve talked to Mayo’s Nancy Henry, a pediatric infectious disease doctor, and had a lengthy conversation. Over the phone, she said that if Lindsey had no compromised lab results, she would not make us give her AZT. YAY! It was now 1993, and Lindsey was drug free, and doing very well.
As Lindsey grew up she was active, and healthy. She played on the Wings soccer team for 8 years, took ballet for 5 years, took swimming lessons, was on the volleyball team, was a cheerleader for three years, and participated in numerous other activities. She was rarely ill and was never hospitalized. Even when she was exposed to chicken pox by her cousins, she didn’t require any extra care, even though we’d been warned that should she ever be exposed to chicken pox, she’d have to be hospitalized.
When Lindsey turned 20, she met, and fell in love with a man named John Martinez. We soon learned she was expecting. She decided to move back home for the duration of the pregnancy, so she moved from Minneapolis to our residence in Brownsdale, near Austin, MN, just 45 miles from Rochester. She decided to enter the midwife program at the Mayo Clinic, where the baby would be born at Methodist Hospital, one of Mayo Health System’s hospitals in Rochester.
I went with Lindsey to every single midwife visit. We always made the trip to Rochester MORE than just a visit to the doctor. We had fun, went out for lunch, and to the children’s shops to see what was new for babies!
Her first midwife visit, June 13, 2012, became tense immediately, as Lindsey explained that she was HIV positive, and therefore did not need to be tested for HIV. She told the admitting nurse or midwife – we’re not sure what her title was – and subsequent investigating provided no further clues – that the drug AZT had almost killed her when she’d taken it the first two years of her life, and she didn’t want it to kill her baby. The nurse who was filling out the computer form didn’t want to skip that test, but Lindsey insisted. The meeting did end on a positive note, although a doctor, someone with more authority, came in and removed the HIV test from the list.
During the next 6 months, HIV was never brought up. Since I was at every single appointment, I can attest to this. Lindsey was not verbally informed or given a single pamphlet about HIV, and never medically urged to take any medications. December 18 her water broke and we drove to the hospital. Once Lindsey was situated, I left the room for just a few minutes. It was while I was gone that the midwife asked Lindsey if she wanted an HIV test. Lindsey said absolutely not. It wasn’t until after Rico had been born that Lindsey was informed of the fact that if an HIV+ mother takes AZT during pregnancy, and the baby is delivered Caesarean, the baby has only a 2% chance of being born HIV positive. NOBODY told her that! That fact was never mentioned.
An Abusive Birth Experience
Lindsey had a very normal full term pregnancy, and the baby was born December 19, 2012. After his birth Rico had an issue with meconium and a pneumothorax, which while not uncommon, meant that he had trouble breathing, and would temporarily need to be in the neonatal intensive care unit. So Lindsey, who had just gone through labor overnight, was deprived of holding her baby except for about 2.5 minutes for a photograph, after which he was whisked away and taken from her arms to the NICU at St. Mary’s, the other hospital in Rochester’s Mayo Medical System. (Rico’s 1- minute Apgar score was 2, and his 5-minute score was 6.)
Lindsey was deprived of every item on her personal list, (Article 4) which was referred to as “The Plan,” a list the midwives encourage each expectant mother to have on hand in the delivery room. Lindsey’s plan included numerous directives including the following: I do not want an epidural block, I do not want an episiotomy, I want my baby boy circumcised, I do not want the umbilical cord cut until the blood stops flowing on its own. Not one of these things was granted for Lindsey, nor was there any explanation provided. Not one. Even the doula Lindsey had hired was ignored as though she were not even present. John and Lindsey wanted Rico circumcised, and when he was released January 10, the dismissal documents stated that he was, but obviously he wasn’t. Her wishes were totally trampled.
About ten minutes after Rico was born, the birthing room filled with numerous medical staff, including a young pediatrician, Dr. Dufendach, who asked out of the blue, “Aren’t there some HIV issues in here?”
Once I gained composure, I wondered why he had waited 6 months to bring up HIV. Since it hadn’t been an issue the entire pregnancy, why bring it up now? And just WHO was this guy!? We had never seen him before.
Side Note: During the pregnancy Lindsey had developed a bacteria, molluscum, which causes bumps that grow larger and then break open. It is very common for children to have molluscum, and it usually goes away on its own, sometimes after 6-12 months. The midwives virtually ignored the molluscum, growing in Lindsey’s pelvic area, citing the fact that pregnant women are also common targets of the condition. But suddenly, just minutes after Rico’s birth, the molluscum was of interest to the dermatology department at Mayo – at least 3 young male doctors wanted to see Lindsey’s molluscum and photograph it for publication! She refused, but it seemed to me that every twenty minutes or so, they’d ask if they could “see” it, and finally she gave in. Before I knew it, they’d gotten her permission to snap pictures of it, too.
Later that morning, an ID (infectious disease) doctor, a lawyer, and a social worker came into Lindsey’s post-delivery room, demanding that she be tested for HIV, and that Rico be tested. Without any discussion whatsoever, they threatened that if she refused, Rico would be removed from her custody. Sound familiar?
All her life, Lindsey had heard “her” story, the story of how her pediatric ID doctor threatened to remove her from our home. Without hesitation she stated “No way. I’m not subjecting Rico to that medication,” referring to the AZT that nearly took her own life. The attorney turned about face, and literally began dialing Olmsted County on his cell phone. He was notifying the authorities that they had a court order to fill out – an order of child protection.
The door had not even closed all the way when Steve pointed out what had just occurred. He urged Lindsey that perhaps she should reconsider, at least until we could get our own legal help. Rico might have to be on the drugs – but better that she give them to him than lose him foster parents who would give it to him.
Lindsey calmed down, realized the wisdom of Steve’s logic, and made the decision to comply. Steve had the nurse call the attorney, Josh Murphy, and told him over the phone, that Lindsey had changed her mind, and would comply. I was standing right next to Steve, and I recall, the attorney told Steve “Okay,” and Steve said, “Now, do I have your word on this?” Murphy said, “Yes, you do.”
So, Lindsey had been awake over 24 hours. Rico had been born just a little before 6AM and had been taken to the Neonatal Intensive Care Unit in a different hospital, 2 miles away. A team of three officials stood at the foot of her bed and threatened to remove Rico from her care. She now had to submit to blood tests, and was subsequently visited by more ID doctors, none of whom she’d met before, who each insisted that Lindsey should go on HIV meds. She should have had a revolving door on her room – every ten minutes someone new came in. It must have been a surreal experience for her, far from the birth experience she had envisioned. Her emotions were being stretched to the point of breaking. It would have been a horrible experience for anyone, let alone a 21 year old woman who had just given birth for the first time.
Rico was in intensive care for 3 weeks. On Day 4 he started breathing on his own. He didn’t drink out of a bottle, so they had to tube feed him through his nose. Lindsey wanted to breast feed him, but the ID doctor, Dr. Huskins, said No, “not until we have you tested for CMV, because we don’t want Rico to be exposed to more viruses than he needs to be.” Supposedly Rico tested positive for HIV, even though most (or even all) babies born of HIV mothers do test positive because they are still carrying their mother’s antibodies until they are 18 months old, when they develop their own antibodies, and the mother’s are sloughed off. At this point, I was wondering if anyone at Mayo knew this fact.
We certainly didn’t know it at the time, but on the second day of Rico’s life, and even possibly, the first day of Rico’s life Dr. Huskins took it upon himself to treat the HIV, and administered an experimental, perhaps controversial, heavy duty drug treatment, presumably intended to shock the HIV out of Rico’s body. The two drugs were Nevirapine and AZT. But at a CARE meeting a few days later, Dr. Huskins shocked us all with this admission: “I made a mistake,” he said. Instead of giving Rico the intended dose of Nevirapine, he accidentally administered a triple dose. John asked, “If that does cause damage, what would it look like?” Dr. Huskins said, “It would be neurological damage.” It was a surreal moment.
It is interesting that this “mistake” was seemingly overlooked, yet we had to wonder why Rico had an MRI while in the NICU. At the time the doctors claimed they were looking for a cause for Rico’s trouble swallowing, and they were wondering why his head circumference was 3% on the growth charts. I was left wondering if they were actually trying to determine if the triple dose of Nevirapine affected Rico’s brain and neurological function. By March 4, his head circumference was at 9% on the growth charts. And the trouble swallowing was diagnosed by an occupational therapist who came in with a tongue depressor and observed that Rico had a split uvula.
I couldn’t help but make a comparison between what happened to Lindsey and Rico and a little girl in Mississippi, whose story was in the headlines March of 2013. Our stories unfolded concurrently and even the prosecutor questioned Dr. Huskins during the trial about the similarities. She had also been diagnosed as HIV+ and treated similarly with large doses of an experimental drug that was supposed to knock the HIV out of her body. At first it appeared to work, but the HIV reappeared months later at which point the story disappeared from the news. It was difficult to miss the similarities. Was Rico being used as a research subject?
Lindsey was given the opportunity to willingly participate in Mayo research. She was paid $25 to fill out the form whether she was going to participate or not. She always filled out her forms, saying, “NO, I do not wish to be part of a study.”
Lindsey tested negative for CMV and started breast feeding Rico before he was released. She was required by Mayo to prove that she could feed him enough so that he would gain weight every day while Rico was in the NICU. A specialist in breast feeding came to the NICU care every morning as Lindsey fed Rico. The breast feeding was working and he was slowly gaining weight. Lindsey and John were allowed to stay overnight in a room just down the hall from the NICU, and part of that week I stayed with Lindsey and Rico in that room. It became tedious and we were hoping to leave Mayo and get home!
A few days before Rico was released, Lindsey was informed by her Mayo social worker, Hannah Mathieson, that a social worker from Mower County, Paul Oelfke, would be stopping by “just to check on things.” We were so surprised that he was coming because the Mayo attorney had promised Steve he would drop all child protective action! We were wrong in assuming Lindsey would never hear from Mower County.
When Paul Oelfke arrived Steve, Lindsey, John and I had a cordial conversation. He was very interested in Lindsey’s past, and seemed impressed that she had not been on any medication since the age of 2. We told him about the 2009 documentary, House of Numbers, which told the story of Lindsey’s experience, and how she was the lone survivor among the pediatric HIV cases in Minnesota in the 90’s. We felt relieved after Oelfke’s visit and it seemed that his questions had been answered. My sister recalls me telling her at the time that it had actually been quite a pleasant visit.
Rico was released from the NICU on January 10, 2013, and on January 18, just 8 days later, Paul Oelfke came to our home, where Lindsey, John, and Rico were living with us. When Oelfke scheduled the appointment he said he wanted to observe Lindsey and John giving Rico his meds, but instead, he showed up at the door with Mower County Deputy Mark May, and served Lindsey and John papers stating that Rico was being taken into the custody of Mower County. There were no specific charges, no statement of HOW they reached that conclusion, and in fact three pages of the 5-page document were missing!
Lindsey’s attorney, Ben Tarshish, was at our home that day, thank God. He instructed us all to stay calm, and to refrain from doing anything because Lindsey and John would have a day in court, their day to explain things to the judge. Lindsey did, however, insist on demonstrating that she knew how administer Rico’s meds, since that had supposedly been the purpose of the visit. This played a huge part in the events to follow.
The hearing was supposed to occur within 72 hours, but it was Martin Luther King weekend, so for 5 days Lindsey didn’t even know where the sheriff had taken Rico. It was sheer hell. Lindsey continued to pump her breast milk and store it in the freezer for future use. Our shell-shocked family members gathered around, stayed at our home for hours and days. Steve’s mom, sister and family were there, our parents, my sister and my brother-in-law, my niece, John’s family – everybody was upset beyond words.
In the 8 days Rico was out of the hospital, Lindsey and John sought a second opinion of Rico’s diagnosis by a doctor in Seattle. Instead of flying with a newborn we chose to drive out to Seattle. But that day, our attorney called and said that because the doctor was not a pediatric specialist, he recommended we turn around and come home, which we did. In order to make the trip, Lindsey and John had cancelled two appointments. The first one was a CARE meeting with a potential new doctor for Rico – a pediatric infectious disease specialist in St. Paul, just in case Lindsey and John decided to relocate to the Twin Cities. The other cancelled appointment was suggested as an option by Dr. Chevalier, at a post-hospital stay appointment. She thought it might be useful for Lindsey to gain some tips on boosting Rico’s caloric intake.
Neither of these appointments was required, and neither one was a physical exam of Rico. But throughout Mayo’s computer records on Rico, it is noted that both appointments were skipped and/or missed. They were not. They were both cancelled, and in fact, the five of us were sitting and waiting at the McDonald House for the doctor to get back to us. We wanted to postpone the appointment just two hours, so Lindsey and John’s attorney could attend. It was to be a meet and greet appointment. The doctor never returned the call. The second appointment was rescheduled for January 21st. Steve called and scheduled it! CPS and Mayo continued to use the “skipped” appointments. Still, this was the pretext for the ambush, and the nightmare that unfolded.
After Rico was seized, a plan was in place for him to go to foster care. But the foster parents had no way to feed him, as Lindsey had been breast feeding him. The Mayo doctors told them he couldn’t drink out of a bottle, though we knew that to be erroneous. Paul Oelfke, the social worker, said when the foster mom arrived to pick up Rico, she noticed a rattling in his throat. Unbeknownst to her and Oelfke, Rico was simply reacting to the meds Lindsey had just given to him. Of the three medications, the worst offender was Kaletra, which was so awful that it made Rico gag, and for several hours afterward, he would cough and try to get that sticky stuff out of his nasal area and throat. Hence, the rattle. So between the rattle and the problem of not being able to use a bottle, they (all non-medical people), decided it would be best to send Rico back to St. Mary’s. Only this time, he would not be admitted to the NICU, a place Rico and the rest of Rico’s family would be used to – NO. He had to get a private room, where he would remain, isolated from everybody, for 52 days, 52 LONG days. Lindsey and John would be allowed to see him only a few hours a day at first, and over the next few days, the rest of us would finally be allowed to see him.
Interestingly John was continually portrayed as an irresponsible absentee father. The emergency room report from the day Rico was removed from our home, states “Biological father has not been actively involved.” The same statement was repeated in Rico’s records on 1/23/13. Also in the records is the phrase, “challenging social situation.” When I read these statements, I was appalled. John lived with us in Brownsdale every weekend for months, and December 9, ten days before Rico was born, he moved in with us full time until late May of 2013. He was present when Rico was born and was at the hospital every day Rico was there. Mayo provides a correction form with enough space for about two sentences, but I would need two encyclopedias for all the corrections!
The foster parents were expected to visit Rico in the hospital, and they did – every morning. One of these mornings the foster dad asked the doctors making their morning rounds how he and his wife would handle having a person with full blown AIDS visiting their home. He was not referring to Rico – he was referring to Lindsey! The nurse of the day nearly fell off her stool, where she was typing on the chart, taking notes of the doctors’ advice for Rico. Later that day, when John’s parents came for a visit, the nurse told them all about the foster dad’s conversation with the docs. The foster dad had referred to Lindsey as a “prostitute and a drug user.” The nurse was visibly upset and felt Lindsey’s HPPA rights had been trampled on! Why was it the foster dad’s business to know and comment on Lindsey’s health status? And what he thought he knew was WRONG! Lindsey rarely had a cold, and certainly did NOT have full blown AIDS – Where had he received this information?
Rico was scheduled to have a feeding tube inserted into his stomach. The first two attempts were botched, and caused the formula to drip into his abdomen, causing a great infection. He looked very skinny, but had a huge stomach. Two of the younger Mayo doctors told us on two separate occasions that the bulging stomach was caused from sucking on a pacifier too much! We could hardly believe our ears. Rico also required 4 transfusions during this stay at the hospital, causing the doctors to realize that Rico was allergic to AZT, the drug Lindsey got in trouble over – the drug she did not want her son to have in the first place.
Mower County Child Protective Services had medical custody over Rico. They approved everything, every procedure, continually defying Mother Nature and common sense. During the trial, April 1 and 2, it was disclosed that Lindsey Brekke, head of CPS, begged Mayo Clinic to keep Rico as long as they possibly could, because she was unable to find a foster home for him. (After the incident at the hospital, our attorney said Rico could not stay with the initial foster family– thank goodness.)
Lindsey and John went every day to see Rico at St. Mary’s, and most days Steve and I went as well. We tried to make a ghastly situation bearable. We thought, at the time, that Rico was given medication that was unnecessary, as Lindsey had lived her whole life, except for the first two years, with NO medication whatsoever. This also added to the stress she bore, causing high anxiety over Rico. She was not able to hold him like a mother would, a normal mother holding a normal baby. It was difficult for her to be natural with him and she could no longer breast feed him. He wasn’t even eating from a bottle – he had numerous tubes in and out of his body, and many days he was not able to be lifted from his crib.
Mayo was pushing for Rico to be released on February 20, and wanted him released to Lindsey, not to foster care. I don’t know why, because all through this ordeal, Mayo appeared to be against her. But we were already seeking media coverage, both local and Twin Cities stations, and maybe they got wind of that, and decided they had better start looking “nice.”
On March 6 and again on March 11, just after Rico arrived home, Liz Collin from WCCO TV came to our home and interviewed all five of us! Lindsey’s attorney advised that Lindsey and John best not be involved except for a photo and a few sentences. Mark Saxonmeyer from KSTP TV also came to interview us. Eventually Baby Rico’s story was covered on all the local TV outlets, and Mason City. Richard Merryhew from the Star Tribune attended both days of the trial and wrote about the story numerous times. It was also covered here, at The Truth Barrier.
Though we were very relieved to have Rico home, things were by no means normal. We were all exhausted. What if the surveillance of our house began again? What if we spotted a sheriff’s car coming down our street? Steve and I were struggling to keep things on an even keel; We had our café in downtown Brownsdale to operate. And how did Lindsey and John feel? They still had court appearances to make. What if the judge decided to remove Rico again? He could if he’d wanted to, as was noted in numerous Mayo medical notes. The trial was scheduled for April 1 and 2.
We have transcripts of the trial. We thought the purpose of the trial was to secure custody of Rico. However, the prosecution turned it into a medical issue – in my opinion, they turned it into a “Steve and Cheryl Nagel’s Faulty Opinion” trial. The prosecution’s first witness was Dr. Huskins, who dominated the questioning for most of the first day. He gave a full description of what he believes are scientific facts about HIV and AIDS. He said sometimes doctors have to choose which procedure provides more benefits, knowing there are risks. He repeated numerous times that sometimes benefits outweigh the risks. Was he justifying the use of the accidental triple dose of Nevirapine, saying the risk of giving it to Rico might have given great benefits? He failed to mention that he didn’t get the parents’ consent to do so.
Lindsey & John’s attorneys, Scott Cody and Ben Tarshish, were two young guys, and though they did their best, they were not prepared for a Mayo doctor, who brought along his entire legal staff. Yes, Josh Murphy and a couple other Mayo legal were observing everything from a private office with a window to the courtroom. Our attorneys were not prepared to have a medical discussion – which we were going to address at a later date. Had we known and been better prepared, we could have brought in at least 10 specialists of our own. They would have at least created doubt about the use of all the drugs Rico was given. Some of these specialists did attend the trial, and were upset they could not speak to the court.
The prosecutor, Jones, wanted assurance that Lindsey and John would only be advised by Mayo doctors and Mower County – not Steve and Cheryl Nagel. He did a “great” job explaining to the court that Lindsey resisted giving Rico meds, and she was to be watched, because she, “was being advised by her parents not to give Rico his meds.”
Scott Cody, Lindsey’s attorney explained it quite clearly, regarding Lindsey and John:
“Once the parents understood the law, they consented to HIV testing for their child and they consented to all medications that were recommended by Mayo Clinic doctors. At no time after that did they waiver from their consent. They’ve never withdrawn their consent. They believe that they were doing the right thing, which is to give the child his medications, follow up on everything that the doctors told them to do, and in the meantime, seek legal process for a court order that would allow them to withdraw that medication. What they’ll testify to is they have no intention of stopping the medication, no intention of wavering from the doctor’s recommendations unless the Court told them that they could. Their motivation was to follow the law. They did not need a CHIPS Petition in place.”
During the trial Steve and I were questioned about our roles in advising Lindsey and John. Lindsey and John were questioned on who makes their decisions for them, and so on.
Paul Oelfke gave testimony at the trial. He was the Mower County social worker who’d visited Lindsey while Rico was still in the NICU at St. Mary’s, and the same social worker who removed Rico from our home. Following is part of his testimony. Cody was doing the questioning.
CODY: You had previously stated that the family was not a flight risk, is that correct?
CODY: You had previously told us that at this time you had no reason to believe, no evidence, that any medications had been withheld, is that correct?
CODY: So in all, what you are telling is that you have no reason to believe medications were withheld, you had no reason to believe that they simply had no showed and not called Mayo Clinic about missing this appointment? Is that fair to say?
CODY: Yet, you recommended, as you told us, that a CHIPS be entered?
CODY: And before you told us that the reason for that recommendation was the fear of withholding medications, is that right?
CODY: Missed appointments, no shows, is that right?
OELFKE: That would be the concern. That would be the risk.
CODY: Yet, what you are telling us is that none of those risks were actually present, is that correct?
CODY: Thank you. I have no further questions.
So Oelfke was lying, even in court. The question is WHY? Why would he do that?
Judge Wellman ordered that Mower County CPS was to continue monitoring Rico’s care. The county would remain in charge of Rico’s medical custody, monitoring that would continue for another 16 months.
Rico was released from the hospital March 8, about 3 weeks before the trial, but in early May had to return to St. Mary’s because of a major skin rash. His torso was bright red, and any measure taken to comfort him was in vain. He would have to stay at St. Mary’s for a few days until they could figure out what had caused the rash. Early the next morning Lindsey and John headed over to Rochester before us. Lindsey called home, quite disturbed because Rico was totally wrapped up in gauze and was extremely uncomfortable. Lindsey was very distressed over the whole thing. We flew out the door, Steve grabbing the video camera to film our entrance to the hospital room, and what we saw was shocking. Poor little Rico was wrapped up like a mummy, limbs spread out and unable to flex one single joint. Tubes from his head, toes and stomach area. It was very upsetting – I was almost sick to my stomach, but tried to keep it together for the benefit of Lindsey and John. It turned out Rico was allergic to the Abacavir he’d begun at the end of his last hospital stay.
During the trial Lindsey and John were not charged with any wrong-doing. Rico was home once again, but was to be monitored by Mower County, which had retained full medical custody. This was not the nice cozy atmosphere conducive to cuddling and snuggling with a new baby. The CPS social workers were allowed to call and show up at will. Lindsey was required to take Rico to all his doctor appointments, (there were over 100), and was required to take parent training in our home. Besides that, Rico was given therapy in our home.
The Mower County CPS social workers were very demanding, and seemed to have mastered the art of making Lindsey feel stupid, and keep her jumping at their every command. They established a system to ensure Lindsey never missed giving Rico his medication. Every 12 hours, 8AM and 8PM, Lindsey was required to Skype herself giving Rico his 3 medications by way of her laptop. This was quite a grueling schedule, and to avoid being late, which she feared would give the county an excuse to confiscate Rico, Lindsey set her alarm clock. She always signed onto the Skype program early and waited in front of her computer holding Rico, who was generally sleeping. The Steps:
1) Dial up the social worker, who was usually not immediately available, so Lindsey would have to redial, sometimes 3-4 times; 2) Show Rico’s stomach, and the tube that went into his stomach to the social worker via the computer camera; 3) Hold up the bottle of medicine so the social worker would lean in to her camera, and view the writing on the bottle, that Lindsey was holding up to the camera on her computer; 4) Fill the syringe with the medicine and hold the syringe up to the camera so the social worker could make sure it was the right amount; 5) Attach the syringe to Rico’s stomach tube, and squeeze it in. All this time, Rico is supposed to be in view of the camera, so the social worker can see it is actually going into Rico’s stomach. Repeat this procedure for the other 2 medications. Then happily, say, “Thank you Jessica, see you in 12 hours! “ If Rico happened to be sleeping – by the end of the Skype process, – Rico was wide awake! Once one of the social workers had the nerve to tell Lindsey that Lindsey Brekke wondered why Lindsey always appeared grumpy! The Skyping thing went on for months, then it finally slowed down to once a day, then once every other day, then once a week.
Rico would cry, arch his back, struggle to get free, sometimes foam at the mouth, and seize, when given his meds. This was excruciating for Lindsey to go through, twice a day, yet she was meticulous about it, and determined to fully comply, to never miss a dose or do a single thing “wrong” that they could jump on. She was terrified they would take him from her again.
It was like living in a full blown police state–a tyranny of Big Brother watching and monitoring your every move. Literally! Once, for example, Lindsey needed to ask for special permission to take Rico to a family wedding in Indiana, which was granted. But we had to drive around looking for WiFi so Lindsey had to slip out of the groom’s dinner Friday night, and the wedding reception on Saturday night, to Skype Mower County. Can you imagine? This had become “normal” life, for us. We sat in a parking lot at Caribou one night and on the floor at a Pizza Hut the other. They simply would NOT trust Lindsey to give Rico his meds unless they were watching. The intimidating tactics from CPS were certainly not conducive to building up Lindsey’s faith in her ability to be a good mother. She felt demoralized and ashamed, even though she had done nothing wrong.
Lindsey was an absolutely wonderful mother.
Every couple of months a new hearing would come up. Just seconds before stepping into the courtroom for the July 18, 2013 hearing, Lindsey was told by Scott Cody, her attorney, that this would be the last time he would be representing her. What? Why? Because John had retained a court-appointed attorney, and was seeking full custody of Rico. (Cody did finish the appeal work, and the appeal was held September 17, 2013.)
So now Lindsey was not only fighting the Mayo Clinic, Mower County and the social workers. She would soon be fighting John Martinez, the man who just a few months earlier, she had planned to marry. She was still wearing the engagement ring. It was yet another shock; someone was trying to take Rico away from her again. One Monday in late July, Steve and I were out having coffee with friends. Lindsey called. By Steve’s face, I could tell it wasn’t good news – Lindsey had just been visited by a detective from the Austin police. He demanded that Lindsey answer questions because they had to find out if Lindsey had told John she was HIV positive before she had sex with him. John was pressing charges. Lindsey refused to answer any questions without her dad present. So the detective, Bruce Hemann, told her that she and her dad better come to the police station later that day to answer the questions. We drove home as fast as we could. Our attorney told us not to take Lindsey to Austin, so we didn’t!
In September, the appeal to Mower County’s ruling occurred. My family and several friends were in attendance. The judge on the left asked Jones, the Mower County prosecutor, how long he intended to keep the CPS order in place. He said, “Until they change the way they think, or 18 years.”
The judge on the right brought up facts that were not part of the trial transcript. How could she do that? Our attorney said he could not bring up anything that was NOT in the original trial. This judge went against the rules of her own court, staring at Lindsey, and said, “They believe HIV doesn’t cause AIDS – EVERYBODY knows HIV causes AIDS.”
There’s something Lindsey, Steve and I agreed to way before 2012, and that was that we were not scientists, so the actual HIV/AIDS theory, whether you believe HIV causes AIDS or not, should be left to them to figure out. What WE, the Nagels, know is that the drug AZT kills people. Every other child in our state who was HIV positive and remained on AZT in the 1990s, died, whereas Lindsey, who was taken off the drug, survived. She was the only one. So for this judge to bring this up, was totally out of place, and showed her prejudice toward us, and particularly to Lindsey. Furthermore, our personal opinion about HIV/AIDS shouldn’t have had any bearing on the matters at hand. The prosecution had no business judging Lindsey on the basis of her parents’ views. She was accountable for her own decisions and behavior. She never failed to comply with any of the instructions or protocol given by the doctors or Mower County. There was never a charge or accusation of noncompliance against her or anyone else in our family.
In hindsight, we can see that it was about this time that Lindsey began to give in to the pressure. Sure, we got the best attorney we could afford to represent her, and she gained physical custody of Rico, with John having him every other weekend. Sure, she got to hold Rico, care for him, and play with him. But the normal relationship between a mother and baby was ruined virtually from the start. She was denied the privilege of holding him at birth, then he was in NICU for 3 weeks, home for 8 days, then taken away from her in the most brutal of ways, and put into the hospital for 52 days. She Skyped twice a day for months. She lost John and then had to fight with him for custody of Rico.
The state wanted to drive a wedge between Lindsey and John. They succeeded.
In October, 2013, 10 months after Rico was born, Lindsey was admitted to Methodist Hospital in St. Louis Park, and treated for pneumonia. It was very serious, so Steve brought Rico up to John’s for the duration of her hospital stay. The first 24 hours, Lindsey was on a ventilator. Steve and I stayed with her the entire two weeks.
In January of 2014 we took a trip to Florida – Steve, me, Lindsey and Rico. Of course, we had to get permission from John, Rico’s doctor, and Mower County. We had a wonderful time in Key West, Miami and Fort Meyer. Our happiness was soon marred by Lindsey’s pain. It was a pain that began in her lower abdomen, and was discovered to be lymph node swelling, caused by a bacterial infection known as MAC. MAC is akin to tuberculosis, but attacks the intestines. It requires a vigorous treatment with 3 antibiotics.
It was at about this time that we noticed Lindsey was growing careless about her eating habits and her health. We had always questioned the risk and reward of the HIV drugs, because taking her off AZT when she was age 2 had saved her life… In general healthy people slough off MAC bacteria, so what was going on now? Was the HIV responsible for her seeming lack of immunity? Was she so stressed that her body succumbed?
During 2014, Lindsey sought treatment at the Mayo Clinic, but the decline in her health continued. We closed our café and decided to move to the Twin Cities, where there would be more resources for Lindsey, more support, and more distance between her and Mower County.
In October 2014, Lindsey began a year-long series of hospital stays, which included a 2-month stay at Bethesda, a recovery hospital in St. Paul. All the way through 2014, Steve and I had been caring for Rico while Lindsey was in the hospital, in compliance with the terms of the court order. But by early January, we realized Lindsey was likely going to be in the hospital indefinitely, we were getting worn out, physically and emotionally, one of us going to the hospital, the other staying home with Rico, and we decided it was time to talk to John. We brought Rico to John, who lives with his parents, in Brooklyn Park. We had no way of knowing how long he would have to be there.
Lindsey was released from Bethesda April 2, and came home, expecting to resume at least some time with Rico, maybe beginning 2-3 days every other week until she got better.
Communication between John and Lindsey had ceased months earlier, and John would only speak with Steve. But now even Steve could get nowhere with John – he flatly refused to give Lindsey any time with Rico! Every time Steve called John with a proposal, John would say, “Only if Lindsey comes (drives) to get him.” Or, “She can come to visit him here, at our house.” Lindsey and Steve came up with a plan to just tell John we were going to pick Rico up on Saturday at 11AM. So Steve texted John that information, and John texted back, “You can’t have him this weekend, he has therapy on Monday.”
Before she became critically ill, Lindsey was denied being with her son. She never got to see Rico again.
Lindsey’s passing followed 2 years of being under brutal siege from the Mayo clinic and CPS in Mower County. The siege continued with John Martinez, and is not resolved. Lindsey was ambushed right after Rico’s birth, and Rico was forced into taking a cocktail of so many HIV drugs, vaccines, and other toxic medications, including the experimental attempt at trying to “knock” the HIV out of his tiny body, that we believe caused permanent brain damage. To my knowledge, he has never spoken a word, crawled, or walked. The last time we saw him, he did not eat, except a few nibbles of food.
Rico’s eyes lit up whenever he was in his mother’s arms, and he had a smile that inspired people following his story, and his mother’s – many on the Internet, from all over the world.
Our family’s unbelievable battle to keep our daughter, and then our grandson alive, has been documented on videos, audio tapes, transcripts, and personal notes. We had a healthy daughter and a healthy grandson 2 ½ years ago. But then the powers that be decided to intervene “heroically” in the delivery room. Today we have neither our daughter nor our grandson who we have not seen since January.
Photo of Rico from Lindsey’s cell phone
[Editor’s note: As Editor of The Truth Barrier, I have requested that the Nagels submit documentation for each claim they made. They have complied. John Martinez was contacted, and given a chance to respond to what has been reported here, but at press time, has not responded.
Having reviewed the legal documents and affidavits, and removed passages that detailed the battle for custody, I can say this with confidence:
As Lindsey’s condition worsened, Rico was cared for more and more by John. During this time, Lindsey and John barely spoke, and finally communication between them stopped. Any messages to John were conveyed by Steve. The Nagels have reportedly spent over $150,000 to fight all the legal battles for Rico at this point. They sold their home and family business and moved to Minneapolis, seeking better care for Lindsey. Their man focus was keeping Lindsey alive, and at the same time, caring for Rico.
A few days ago, John’s sister wrote this on Rico’s Facebook page:
“Ironic how the page is titled Save Rico and yet his maternal grand parents haven’t seen or really asked about Rico in a year. Don’t disguise your mission as one to better the life of a little boy. This has nothing to do with Rico and never has, and it’s disgusting that his image and story are being used by people that don’t care enough to even invite him to his mother’s funeral.
For everyone that asks about Rico’s well being that doesn’t receive answers. He’s doing quite well in his father’s care.”
In response, Steve Nagel said, “There has been no funeral for Lindsey. We are still mourning the loss of our daughter.”
Further details will come to light in the documentary “Born Free: The Shocking Story of Rico Martinez Nagel,” set to be released in 2016.