Thursday, March 27, 2014

Justina Pelletier Case Hits Home With Me

When I was very young there was an incident in my family where a child was bothered at a teaching hospital while the parent sat by.  It wasn't really that big a deal.  The parent was a very good parent, just a little overwhelmed by the situation.  The other parent entered the room and called out the medical personnel almost immediately.

That story really had an effect on me.  Because of it, I am always on guard when interacting with the medical community.

First example, when Tommy was 2 or 3 we went to Florida for Christmas.  My late mother-in-law (who is dearly missed) lived on the west coast near Sarasota.  Christmas Eve Tommy was nauseous and listless.  We took him to the ER  Now full disclaimer, I am a wicked snob about Boston being the hub of the medical world and if you are down there in "God's Waiting Room", well......  So anyway, we are in an exam room and a very pleasant young man comes in and begins checking on Tommy.  Eyes, ears, heart, temperature.  He tells us that the rectal thermometer isn't reading correctly and excuses himself.  He comes back with another and tries again.  He's still not happy.  Now Tommy is sick and in a strange place and being prodded..... So when the nice young man says he has to get someone/something else to get this temp, I reply "Nope, you had two shots  at it, put your hand on his head and guess.  He feels bad enough already."  LOL!  My ex and this guy are flabbergasted!  So there was some conferencing with the other medical people and they told us he had an ear infection.  They gave us a script, which I threw away on the was out the door.  Tommy hadn't touched his ear once.  The next day Tommy was better and everyone else was sick.  It was a 24 hour stomach bug.  The script would have been useless.  But even if it had been an ear infection, there is still no reason to treat a sick baby that way.  And I didn't care if people in this hospital thought I was rude or abrupt.

Second example, Tommy again.  Now he 3 1/2 and his cardiologist was ready to correct Tommy's PDA.  Patent Ductus Arteriosis is a condition where a small neonate blood vessel doesn't close at birth.  Everyone has the ductus arteriosis while in the womb, but in most people it closes.  So when it doesn't close on it's own, it must be surgically closed.  If there is no shortness of breath and the baby gains weight normally, they wait for the baby to gain enough weight/hit a certain age.  So Tommy had no other symptoms and they had been doing this surgery since the '40s and never lost anyone.  But that didn't matter too me.  I read everything they gave me.  This was 1985 - no internet.  But there was one thing that I did know about; AIDS.  1985 was when they started screening the nation's blood supply.  So I told them that we would be donating the blood for Tommy's operation.  They tried to dismiss me but I held fast.  Some people thought I was overreacting.  But I stuck to my guns and made them screen us and take our blood.  I KNOW they thought I was a pain in the ass.  When we took Tommy in for his one year post-op visit, the doctor told me that I was ahead of the curve and everyone was donating their own blood.  That the whole pre-op process was changed.

What's my point?  I was pushy, bossy, aggressive and I'm sure some found me abrasive.  In other words, no different than the Pelletiers.  I was aggressive when advocating for my child.  Reading their story is like finding out you have no brakes after you safely glide to a stop.  I look back and realize the very same thing could have happened to me.  As a matter of fact, according to the December 15th article on the case;

Sounds like me.  There but for the grace of God.....

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