6 April 2016

The conspiracy theorists on the internet

Hey, have you heard the one about the father who resuscitated his own baby daughter at birth when the physicians who'd promised to do it decided not to?

How about the one where the baby self-extubated and the neonatologist didn't re-intubate, despite there being no parental consent to withdraw treatment?

Or there's the case where a women was told she couldn't give birth to her baby in the private hospital because it might upset the staff?

Or that one where the parents got sent home from A&E and told their child had a mild virus, but when she died that night they found out from the notes that apparently they'd agreed to take the child home to die?

Oh, and what about the child whose breathing support was removed because the hospital were short of machines and another child without a disability needed it?


Actually, I won't go on. If you happen to be a parent of a child with trisomy 18 and have been around trisomy support groups for a while, you're probably nodding along, recognising most of those stories and waiting to chime in with more. If you happen not to be in that situation, you're probably thinking, "What? Well, I know that's exaggerated!" If you're feeling relatively charitable to us, you're probably thinking that we misunderstood; if you're not, you probably think we're at best overstating, at worst downright lying, because these things could never happen.

Except they do. For all of those cases, I could refer you to the parents they happened to: they aren't crazy stories from people who misunderstood; sadly they aren't even particularly unrepresentative of the care trisomy families receive. And this is what makes things difficult for new families.

When you first receive a diagnosis of trisomy 18, you come to it with whatever your existing view of medics and the medical system may be. For most of us, that is, with varying degrees of trust: a touching belief in informed consent and patient choice; a belief that doctors and nurses, predominately, are good people who want to help us; and a belief that medical practice is based on evidence.

Many of us believe that if we just explain clearly the approach we want to take, they'll facilitate it (experienced trisomy families will be emitting hollow laughs by now). When that doesn't happen, we think that perhaps we're at the cutting edge; possibly our physicians simply haven't read the evidence yet - so we help them out (so we think) by giving them references, pointing them in the direction of research and other families.

At this point, if you are active online, people like us will be pointing out that you can't trust the medics; that you may be in a situation where you will be denied care; that 'we'll have a meeting in two weeks' is simply a delaying tactic; that you do not have time for this. That you probably need to think about your next steps. And you will dismiss us as 'the conspiracy theorists on the internet', because there is no way that everything we say could possibly be true.

Some people never get past this phase. They believe forever that the care they received - which was often grossly inadequate, if not frankly negligent - was sufficient, and we are all crazy for telling them otherwise. Pretty quickly they start avoiding us.

Avoidance is usually the first step when you don't want to hear what we have to say, and if your medics play it well, they can keep you here. Never outright denying care, just delaying and fobbing you off, while being kind. With luck (they think), you'll never ask us again. We're unlikely to see you until you hit a crisis, meet a more honest doctor or (God forbid) your child dies.

Some of you, however, walk into that next appointment and you get a denial of care. You are stunned: surely now they've seen the evidence, now they know, they must understand - and yet they don't, they are saying 'no'. What's your next step? If you turn to us, 'the conspiracy theorists on the internet', again, and we come up with a list of advice, we probably don't sound particularly surprised.

What are your next steps? Well, certainly not to listen to us...

My experience is that the process of coming to terms with everything you ever believed being shaken goes something like this:

First, you assume that your doctors must be aberrations. This would fit your world-view of doctors as being better than this. You immediately rush out to seek second opinions, assuming another hospital, another doctor, will surely be better. See the value in your child. Treat. They must be out there.

Occasionally, you may get lucky this way. There are indeed some 'mavericks' out there. We found one or two on our journey. Most of you find (especially since second opinions are often sought from particularly renowned hospitals, which in fact set the culture rather than opposing it) that you get exactly the same opinion.

A few give up at this point, but the rest suddenly realise that this is a conspiracy, that everyone is against them. That this is how things work.

The next step is to say: "There must be a law!"

You come back to us and ask about it. There must be a law that prevents this kind of discrimination against your child, and we tell you no. You don't believe us. You look it up. We are right. This is legal, this is happening. All our stories begin to make sense.

This is when people engage with us, the conspiracy theorists on the internet.

The conspiracy is now your reality. You try to tell people and they don't believe you. New families join and you tell them your story and they don't believe you either.

You are now 'the conspiracy theorists on the internet' yourself, and so it goes on...

1 comment:

  1. could this explain the lack of education re: ng tubes, gtubes, etc. upon discharge and the overlooking of a family's need for a shift nurse to help with the baby's complicated feedings and daily p/t and o/t therapy? Could they really be disregarding the baby's good breathing and good heart and brain function just because of the Trisomy 18 diagnosis?


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