Research before you judge

For months I've ignored the hateful statements made by those who feel Justina Pelletier was unjustly taken from her parents care by Boston Children's Hospital.     Of course with the media paints a scary picture of a seemingly normal girl being ripped from her parents arms and forced into the "system".  There is propaganda surrounding this case everywhere.  People who have no connection to Boston Children's bashing them, talking about how awful they are.  On the surface, yes it looks like a horrible story of parents losing their child after looking for a second opinion.   However, any educated person should know that you cannot take a story from a newspaper for 100% fact, nor to believe that pertinent information may have been excluded.

So the question remains: Does Pelletier suffer from mitochondrial disease as her parents state, or is Justina a victim of medical abuse?  How do we make that decision based solely on sensationalized news stories?    Of course it's always heart breaking to see a family torn apart, but in reality,  this has the potential to be child abuse.    As stated in an article written by the Slate Group:

 A 2011 study of medical child abuse cases published in the journal Pediatrics suggested that many medical child abusers seek out a diagnosis of mitochondrial disease, in part because it guarantees a long period of heavy involvement with the medical system. Although the study’s sample size was small, the numbers are still deeply troubling: More than half of children subjected to medical child abuse had been tested for mitochondrial disease.

Unfortunately, the symptoms between medical abuse and mitochondrial disease are very similar, both of which can be life threatening.  So which is the correct way to handle it?   Contrary to popular belief, DCF does not make the decision on where the child gets placed.  That decision is made by the judicial system.  In this case the evidence was substantial enough for a judge to place Justina is alternate care away from her parents.     So, you have a doctor who does not believe Justina has mito, a DCF worker who feels there is abuse/neglect involved, and a judge who takes all of this evidence and finds it pertinent to his decision.     This is the legal system of the United States.  This is the very system that keeps crack babies out of the arms of their crack addicted mothers.  Just because a family looks good on the exterior doesn't mean they are any better than the crack moms.     Removal of a child from their family requires a OVERWHELMING burden of proof.  

Of course I feel for this family, if they are in fact innocent in all of this.  However,  what if BCH is actually right?  Then they may have saved this child.   If the tables were turned and BCH released Justina to her parents and it was later discovered that the parents were abusive, the outrage would be unimaginable.    There is no winning with the public.  

As for my family,  my entire blog is dedicated to the passion I have for Children's Hospital Boston.   I never, ever once was threatened in any way, shape or form.  My daughter was labeled as "failure to thrive"  that could easily be misconstrued as I wasn't feeding or caring for her properly.    There was never even an insinuation that I could be to blame for any of her illness.   (And yes, she had a rare diagnosis)   The doctors at Children's Hospital Boston are the most amazing team of doctors I have ever met in my life.   My daughter had a team of 5.  We met many more along the way, from surgeons to anesthesiologists and every one of them were respectful, knowledgeable and truly caring.   One anesthesiologist was literally rocking my daughter to comfort her when I was allowed back into recovery.   You do not receive that type of personalized, heart warming care anywhere else.   

The point of this blog is to pretty much say, THERE ARE TWO SIDES TO EVERY STORY.   HIPPA is hindering CHB's side.  Before bashing an institution comprised of  first-class doctors with knowledge that saves the lives of THOUSANDS of children every year   take a unbiased approach and research the topic at hand.   

My daughter with her surgeon at Boston Children's

Maybe Children's is wrong, but in my heart I don't think they are.   Tarnishing a hospital that has made so many families lives complete (my own included) truly isn't fair.   Don't believe everything you read, and take every news story with a grain of salt.  

I wish the best to the Pelletier family, but truly, in my eyes the hospital did what they felt was best.