Thursday, March 20, 2014

Sometimes, There is no Right Decisions

Dear Ellie,

This morning, you were extubated again.  Not by accident like the last two times, but on purpose.  Your mother and I had to make a decision: give you a dose of steroids or extubate without them.  We chose to go without them and give you one fair chance off of the endo-tracheal tube.  It was a difficult decision and we didn't jump to any conclusions.  Difficult, because there is a chance that tiny doses of the steroid Dexamethasone would actually have no measurable influence on your brain development what so ever.  If that's the case, then we've thrown away a useful instrument for your recovery.  The truth, however, is that no one knows the true effect of the protocol in question, yet.

The medical literature on Dexamethasone at HIGH doses is clear.  It unambiguously scrambles the brain.  There has been about 4-5 periods of Dexamethasone over the course of 30 years.  Each time, doctors thought that it was perfectly safe after dosage levels were reduced.  Each time, they eventually discovered that they were wrong.  So the newest protocol recommends an even lower dosage and again, THIS time its supposed to be safe.  Indeed, when you look at the abstract for the study in question, the treatment looks promising.  However, when I examined the actual raw data, not so much.  The study only met 5 percent of its target sample size, and as I've probably told you now about science, meager replication frequently yields meager results.  What's more, the p-values are marginally significant and the apparent positive effects are questionable.  The raw data shows that the treatment group WAS worse off when it came to brain development, and because the sample size was so small its hard to tell whether there would have been a statistically significant result with more replication.  When I brought these concerns up with one of the doctors, well, he didn't seem to have read the study--- upon which your steroid treatment would be based--- much beyond the abstract.  So anyway... I don't want to bog you down in the muck of statistics.

To summarize, the effects at that dosage are still poorly understood for a micro-preemie of your age.  Maybe it can stifle brain development.  Maybe not.  Maybe it can improve long term long outcomes.  Maybe not.  So really, what we're doing with either decision is exchanging a maybe for a maybe.  We've chosen to temporarily forgo a treatment that might help your lungs so that it might not hurt your brain.

A parents always wants to do whats best for their children, to carry whatever weight they can on their own shoulders so that their children do not.  But for us, there is no such choice.  All we can do is grapple with uncertainties.  I wish I could say that we made the right decision, but sometimes there isn't an obvious right decision.

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