JW babies don't always get blood transfusions

by OrphanCrow 8 Replies latest watchtower medical

  • OrphanCrow

    It is a common misconception that a JW baby who requires a blood transfusion will get one through a court order. This does not always happen.

    The following study demonstrates how a JW baby is vulnerable to being used for experimental procedures.

    Sn-Mesoporphyrin interdiction of severe hyperbilirubinemia in Jehovah's Witness newborns as an alternative to exchange transfusion.

    The condition that these two JW babies had was hyperbilirubinemia (jaundice). In both cases, the parents refused to give permission for their babies to receive an exchange transfusion after the standard treatment of phototherapy didn't work. In both cases, the hospitals were prepared to seek court orders to give the babies the transfusions when intervention (presumably from the HLC) facilitated the experimental use of a drug that had been being used as a preventive drug for jaundice or used in conjunction with photo therapy. To use this drug instead of an exchange transfusion was beyond what the drug had been used for up until the time that the HLC arranged for it to be used that way for these two JW babies.

    From the abstract:

    CASE 1: This patient was a preterm male infant (gestational age: 35 5/7 weeks; birth weight: 2790 g) whose plasma bilirubin concentration (PBC) at 1 hour after birth was 5.0 mg/dL. Despite intensive phototherapy with 3 banks of lights and 1 biliblanket, the PBC increased steadily with no diminution in the rate of increase for 75 hours. In view of the problems of immune hemolysis, and prematurity, and the inability of phototherapy to stop progression of hyperbilirubinemia, a decision to carry out an exchange transfusion was made; the decision was, however, rejected by the Jehovah's Witness parents. Pending legal action to compel use of the procedure, a request to this (Rockefeller) laboratory for SnMP was made; its use was approved by the Food and Drug Administration; and the inhibitor was delivered to the physician-in-charge (D.P.M.) in Sioux Falls, South Dakota. The single dose of SnMP was administered to the infant at 75 hours after birth; the course of hyperbilirubinemia before and after the use of the inhibitor is shown in Fig 1. [figure: see text].
    CASE 2: This female term infant (gestational age: 38-39 weeks; birth weight: 4140 g) with immune hemolysis was delivered by cesarean section and because of problems related to meconium aspiration required helicopter transfer to the Special Care Nursery in Abilene, Texas, where 10 hours after birth the first PBC was determined to be 18.0 mg/dL. Double-bank phototherapy plus a biliblanket was initiated; a third bank of lights was later ordered. The PBC fluctuated in the ensuing 2 days between 13.8 to 25.8 mg/dL during which suggestive clinical signs of possible bilirubin encephalopathy became manifest. In view of the clinical circumstances and the continued severe hyperbilirubinemia, permission for a double-exchange transfusion was requested. The parents, who were Jehovah's Witness adherents, refused the procedure. While preparing legal action to compel use of the exchange, a request was made to this (Rockefeller) laboratory for use of SnMP to attempt control of hyperbilirubinemia. With FDA approval, the SnMP was delivered to the attending neonatologist (J. R. M.) in Abilene and administered in a single dose (6 micromol/kg birth weight) at 56 hours after birth when the PBC was 19.5 mg/dL. The course of bilirubinemia before and after SnMP use is shown in Fig 2. [figure: see text].

    The above article/study was published in Dec 2001 (the treatment likely occurred in 2000).

    InfaCare Pharmaceutical Corporation was founded in 2001.

    InfaCare Pharmaceutical Corporation engages in the development and commercialization of pharmaceuticals for the neonatal and pediatric patient population. It offers Stanate, a heme oxygenase inhibitor for the treatment of infantile jaundice or hyperbilirubinemia. The company was founded in 2001 and is based in Trevose, Pennsylvania. As of September 25, 2017, InfaCare Pharmaceutical Corporation operates as a subsidiary of Mallinckrodt Public Limited Company.

    Infacare filed for a clinical trial in 2003:

    Compassionate Use of Stannsoporfin as an Adjuvant to Phototherapy to Reduce the Need for Exchange Transfusions

    Brief Summary:
    The purpose of this protocol is to make Stanate (TM) [stannsoporfin, tin-mesoporphyrin] available to infants who meet the following criteria:
    the infant has a very high level of bilirubin without an adequate clinical response to phototherapy;
    the infant requires an exchange transfusion; and
    the family refuses to allow the administration of blood products, particularly on religious grounds, such as within the Jehovah's Witness community.

    And that is why JW babies are valuable to the pharmaceutical industry. JW babies become tiny little guinea pigs, their treatment being controlled and arranged for by the WT/org's Hospital Liaison squad.

  • Bobcat

    So how did the babies do after the experimental treatment? Did they survive? Complications? Just curious.

    Wait, I just checked the report in the link (silly me):

    The 2 cases described in this report confirmed the efficacy of SnMP in terminating progression of hyperbilirubinemia in infants in whom phototherapy had failed to sufficiently control the problem and whose parents, for religious reasons, would not permit exchange transfusions. Interdiction of severe hyperbilirubinemia by inhibiting the production of bilirubin with SnMP can be an effective alternative to the use of exchange transfusion in the management of severe newborn jaundice that has not responded sufficiently to light treatment to ease concern about the development of bilirubin encephalopathy.

    I'm glad it turned out well in their case.

  • Diogenesister

    oh god OC I can't even read this it will make me so furious.

    As a nurse who has worked in liver intensive care and has scrubbed to assist in transplants I have one thing to say.

    If people think patient welfare is always put above the chance to advance a career or conduct research via patient response to new and/or differing combinations of therapies they are fooling themselves.

    Yes. Even babies. They had probably been waiting for this opportunity.

    "compassionate"my ass.

  • OrphanCrow
    Bobcat: I'm glad it turned out well in their case.

    Yes, both JW babies survived.

    We wouldn't be reading about it if they hadn't - babies who die receiving experimental procedures/drugs usually don't make it into medical journals. We don't know if there were other babies that didn't survive previous to (or after) these two babies' treatment.

    And of course we are all glad that the babies lived - that is exactly the basic human emotion that is played on when these cases occur. Not only is an infant being exploited, the parents are exploited. It is not difficult to convince JW parents to let their babies be used as guinea pigs. They are convinced that they are doing the right thing by denying blood for their baby and they will agree to anything that is proposed as an "alternative" treatment. Anything at all.

    It is incredibly easy to get parental consent from JW parents for anything but a blood transfusion, even if the risks for the alternative procedure/drug far exceed the risks of a blood transfusion.

    Dio: Yes. Even babies. They had probably been waiting for this opportunity.

    Absolutely. Treating these JW babies with this drug didn't just pop up out of the blue.

    It is a fairly complicated procedure to follow just to access the drug that was used in the above cases. At the time, the drug was being produced by Rochelle, a pharma company. This treatment would be off label. And then, note how quickly an independent company was started to promote the drug, and then how, once the clinical trial was completed on JW babies, the company Infacare was bought up by a much larger company.

    I have only scratched the surface on the company, Mallinckrodt, that now owns Infacare, but... and this could be coincidental of course, seeing as Mallinckrodt is pretty large...but, it wasn't too difficult to turn up some JWs that are connected to, or work for, Mallinckrodt. Jus' sayin'...

    "compassionate"my ass


    That would be like saying that you were being compassionate by throwing out a life preserver to somebody that you had pushed overboard

  • Vidiot
    Orphancrow - "That would be like saying that you were being compassionate by throwing out a life preserver to somebody that you had pushed overboard."

    You know...

    ...much to my dismay... I can actually picture Anthony Morris III doing that.

  • TheWonderofYou

    HLC let the doctors and ethic committees believe that (excerpt of the guideline):

    "Children of witnesses Jehovahs have no social disadvantages in their family or in a blood transfusion to expect their social environment. This will be clear from relevant publications. The Jehovah's Witness Local Hospital Relations Committee also has confirmed this.

    As a rule, Jehovah's Witnesses also accept the legal obligation of the doctors, if necessary to interfere with parental responsibility, provided that the persons entitled to care have refuse consent to medically necessary treatments with blood transfusions.

    Likewise, parents usually understand the crisis of conscience of doctors, if they would not treat children."

    Askepios clinics Sankt Augustin, 2011


    Other german information





    In case of imminent danger - in case of emergency, the doctor must treat arthritis according to accepted scientific methods and perform a required blood transfusion!

  • Bobcat

    Hi OrphanCrow,

    I hope you don't think I was being facetious. I was curious about how it turned out for the babies. And then it occurred to me that you provided a link.

    You are right that those with a bad outcome would probably remain anonymous. And even the parents would probably blame 'the luck of the draw' rather than the Org and its policies.

  • sir82
    Orphancrow - "That would be like saying that you were being compassionate by throwing out a life preserver to somebody that you had pushed overboard."

    You know...

    ...much to my dismay... I can actually picture Anthony Morris III doing that.

    Only if the victim's swim trunks weren't (too-tight) speedos.

  • OrphanCrow
    Bobcat: Hi OrphanCrow,
    I hope you don't think I was being facetious

    Oh, not at all. I thought your response was natural and normal. It is how we all would respond - "Were the babies ok?"

    It is ironic in a sick sort of way - when Infacare was promoting their product in later years, they would use the clinical trials from studies done on the general population, where the drug stannsoporfin was used as preventive and as an adjunct to phototherapy, as support for a much needed drug (it has helped lots of babies and hopefully will continue to save lives), and then they would present their "poster babies" - six JW babies who "avoided brain damage" by using this drug off label.

    Whenever I read a media blurb about those six babies, I can't help but be reminded of the WT's poster children they have used over the years that have died as martyrs for the org's blood phobia.

    And I wonder how many JW babies and children the medical world could plaster on the front pages of their "martyr list" - the ones who die and never make it into medical journals

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