Saturday, October 22, 2011

Follow up on my post about Natalie and SSPE

There were two reactions to my post about Natalie's entirely preventable death from SSPE that I had put up yesterday.

One that invariably came from pro-vaccine minded parents, which was "oh, how horrible, the poor child/parents" and sometimes included "can we go after those vaccine-refusing parents"

and one that invariably came from anti-vaccine minded parents, which was "oh, how horrible, how can you call our children potential murder weapons" and sometimes included "you must be paid to post this" pharmashill accusations.

So here are some clarifications:

I don't know much about the parents who took their unvaccinated 11 year old to that pediatrician's practice. I can say with some conviction that neither Andrew Wakefield nor Jenny McCarthy had anything to do with their decision, since this happened in Germany in 1999 and their son was 11 then, so their anti-vaccine decision must have happened 10 years earlier, when neither Wakefield nor McCarthy were a topic (and they never really became one in Germany anyway). We don't know what made them not vaccinate. I am pretty sure they did not intend this to happen.

There is no provision to sue these parents in German law. The new Infektionenschutzgesetz was passed after this all got started and it only regulates intentional transmission of reportable infectious diseases. I think it would be very difficult to prove intent here. Also, I don't know about Natalie's parents, but Micha's family are devout Christians. While they are obviously sad and burdened, they do not seek punishment for that other family.

I posted a link to this blog on Mumsnet and that caused quite an upheaval amongst non-vaccinating parents. There was a lot of profanity (seemingly caused by the -wrong- assumption that I was addressing people directly, while being fully aware of the children's medical histories), but I am accepting this:

A lot of non-vaccinating parents made their decision after careful thought and deliberation with their health professional. They are aware of the risks of their non-vaccine decision and they are not necessarily comfortable with those risks. However, for them, the risks of not vaccinating outweighs the risks of vaccinating their children. To be told that they are turning their kids into potential murder weapons and to scare them with what is certainly a) a very unlikely and b) the most catastrophic outcome of a family not vaccinating deals them an unfair blow and it is not really helpful. This was not my intention and I have apologised to one mum there and hereby do to any parent in the above situation here.

That said: if you are thinking about not vaccinating your child and you are currently weighing the pros and cons: have a look at my previous blog and previous post on this situation and weigh this into your decision.

12 comments:

  1. This is an important clarification. And it is for those children/adults who cannot be vaccinated due to health vulnerabilities that the rest of us should.

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  2. I don't think you needed to apologize. These people need to be humbled and scared into realizing the danger in losing the "herd effect".

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  3. I agree Anonymous and Me. I think that the opposition to Catherina's statement is the result of disbelief that an action such as wilful vaccine refusal could lead to stark outcomes like death or permanent disability. On the other hand, children that are unable to be vaccinated for medical reasons rely upon herd immunity and have the (rightful) expectation to be protected.

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  4. Anonymous - I don't think that scaring people into important decisions is a good strategy. Parents of children who cannot be vaccinated (let's leave it at this, the reasons are varied and I am not going to second guess any of them in this thread) are scared enough. A story like Natalie's is not going to scare them the other way, it just adds to the burden of their overall situation (because the reason they don't vaccinate is usually that they have a very sick child to begin with).

    Those who don't vaccinate because of tinfoil conspiracy lies, or because Mother Gaia *will* take care of us if we don't doubt her big plan by vaccinating (and yes, I would not bring them up, if I had not interacted with such parents - recently someone claimed that the reason for polio was not a virus but that we don't run around in contact with the Earth, i.e. barefoot enough) will not be scared into vaccinating either, but I want to be able to say* that I raised awareness for one possible (even if unlikely in this magnitude) consequence, so they cannot claim they "didn't know".

    *in this one particular case I feel extra strongly, because I have interacted with Micha's mum and uncle

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  5. Disgusting phrase 'murder weapons.' http://iansvoice.org/default.aspx These parents thought they were 'doing the right thing' too - their baby died. Murder weapon? Hepatitis B injection.

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  6. Anon - that is a very sad story. You seem to be in the wrong thread though.

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  7. There is no provision to sue these parents in German law. The new Infektionenschutzgesetz was passed after this all got started and it only regulates intentional transmission of reportable infectious diseases.

    There is a provision in the USA to sue for damages from a vaccine injury. There is a table for known reactions, and the evidence for proving it was the vaccine for an injury that is not tabulated is not terribly high. Though in the following list there many many cases which are dismissed, but also many where there was compensation:
    http://www.uscfc.uscourts.gov/opinions_decisions_vaccine/UnPublished

    As I read through some of these, the compensation is often not very high, and the evidence against the vaccine is not very much.

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  8. Wow, I don't think an apology is warranted here. What I'm learning is that fear actually is a good way of motivating parents. It certainly motivated me. And it's the only thing that motivates anti-vaxxers. Why can we not show the other side of vaccines--what happens when you don't vaccinate--without being accused of "scaring people into vaccinating." The anti-vaxxers so this all the time with lies about the dangers of vaccines.

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  9. I am the mother of a son who is now nearly an adult, with an immunodeficiency who was not and will not be vaccinated. I accept that his immune system is different, and puts him at risk.

    I also know that SSPE is a result of a child's immune system not working properly, though I've been told that my child's immunodeficiency is unlikely to result in that. He got measles at two and managed fine. He's also had whooping cough (but then so have lots of vaccinated children), mumps and chickenpox, and did okay too.

    I am not at all concerned that other people's children are not vaccinated.

    We are also a committed Christian family, and all our children are God's gift to us, and we believe that if God has a mission for our child, they will achieve it. We also believe that if our children die - from whatever cause - maybe a car crash, or hepatitis B, or whatever, that the scripture that says that "our times are in His hands" is the only relevant one to us.

    Anything that resembles resentment, bitterness, anger, veangance simply separates us from God, and is misdirected.

    And it's knowing the above, and our relationship with God, that puts us at ease with the fact that other children are not vaccinated. We also researched carefully, and also decided not to vaccinate our other children either. They weren't tested as the youngest one was because he clearly showed signs that something was amiss, so we don't know if the others have any immune system issues, but they've all got through the same illnesses with no problems.

    I know that a lot of other people won't have that framework from which to work. I'm just saying that if, at some point, our immunodeficient child gets something for which there is a vaccine, and dies as a result, we will not be blaming anyone else for that event.

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  10. I also know that SSPE is a result of a child's immune system not working properly, though I've been told that my child's immunodeficiency is unlikely to result in that.

    We don't know that to be the case yet. There are yet-to-be-identified host factors that may be involved with the progression of SSPE but you were misinformed.

    We are also a committed Christian family, and all our children are God's gift to us, and we believe that if God has a mission for our child, they will achieve it. We also believe that if our children die - from whatever cause - maybe a car crash, or hepatitis B, or whatever, that the scripture that says that "our times are in His hands" is the only relevant one to us.

    On one hand, I'm glad you have found solace, but on the other, if you don't do everything within your power to protect your children and lazily pass their fate off to your god's will, then I find that repugnant.

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  11. Natalie Knäpp was given a Roman Catholic burial. See
    http://www.lz-trauer.de/Traueranzeige/Natalie-Knaepp

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    Replies
    1. Yes, both her parents and Micha's are deeply religious, something that helped them through the years of the children's decline.

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