Tuesday, February 25, 2014

The Scariest Story I Have Heard -- Justina Pelletier

This is a story that dates back for over a year, but I only heard about it last night.  I cannot fathom the confluence of events that have led to this story, and find it to be one of the scariest stories I have ever heard.  
Justina Pelletier is a 15 year old Connecticut teenager who was diagnosed at Tufts Medical Center with Mitochondrial disorder, which is a disease resulting from:
failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised.
In February, 2012, Justina caught the flu and her parents, after consultation with her doctors at Tufts, took her to see a gastrointestinal specialist at Boston's Children's Hospital.  Unfortunately, this is where the story takes a horrible twist.  A doctor at Children's Hospital did not agree with the specialist at Tufts, and claimed that Justina was misdiagnosed.  Instead, claiming that mitochondrial disorder does not exist, they diagnosed Justina with "somatoformdisorder, a mental illness characterized by pain and gastrointestinal symptoms that have no identifiable physical cause."  Rather than call her treating doctors at Tufts and consult on Justina's condition, Children's Hospital accused Justina's parents of child abuse and called The Massachusetts Department of Children and Families ("DCF").  DCF ordered Justina's parents to attend a hearing the next day to defend their parental rights.  That was 13 months ago.

Since that day, Justina has been locked in a psychiatric ward at Children's Hospital and has not received any medical treatment for her mitochondrial disorder.  Her parents are permitted one hour per week of supervised custody.  Now, lets assume that the doctors at Children's Hospital were correct, wouldn't you expect Justina's condition to improve with psychiatric care?  Well, from all accounts, her condition has worsened.  She is now confined to a wheel chair and continues to report symptoms. Making maters even worse, the Family Court has ordered Justina to be placed in foster care.  Less treatment options and even less contact with her family.  Lets remember, agree or disagree with the diagnoses, a reputable hospital like Tufts prescribed treatment, that the family was following, and they have been accused by another hospital with abuse, because they disagree with the diagnosis.  

Underscoring all of this, the Court has ordered a gag order on the proceedings.  Justina's parents have been prohibited, under penalty of criminal sanctions, from speaking about this to the press, so this story has gone unreported for a very long time.  Friday night, Justina's father, believing his daughter's life is at stake, defied the gag order and appeared on Fox News' The Kelly Files.  So not only has this family been torn apart by this act, their constitutional rights of free speech have been taken away.  Freedom of the press has been taken away, as the press has been bared from the courthouse.  I do not understand why there could be a gag order in this case.  This is not a jury issue.  There are no security issues at stake. Its merely to insulate the Judge, the Hospital and DCF from criticism.  

As I said, this is a scary case to me.  I cannot imagine getting a diagnosis from a reputable doctor, following his medical advise, and then having a second doctor disagree, call me a child abuser and take away my children.  But if it happened in Boston, why can't it happen it again?  

This case has gone on to far and to long.  A life is at stake.  A family is at stake.  What we have is judicial activism, and over stepping by a hospital and children's services.  Often, organizations like DCF are accused of letting children fall thought the system, with deadly results.  Those cases are a shame, and should not happen.  Here, DCF has made up its mind on a case and facts be damned, will pursue it.  Hopefully it does not have similar deadly results.  DCF, the Court and Children's Hospital should step back and think.  If Justina dies, her death will be on their hands.  The Massachusetts Attorney General  should proceed with charges against them, as if they pulled the trigger.  

More information can be found at A Miracle for Justina, which also has a link to donate to the Pelletier family's legal fund if you wish.

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