Thursday, February 20, 2014

Update on the Pelletier Case


 We have crossed into an era in our nation in which parents have very little power with regard to their children.   This is disturbing because generally, the people who care the most and who have the greatest stake in the safety and success of a child, are the parents of that child.   Now, we all know or have known a case where this was not true, but most of the time, the parents of a child can be counted upon to make sacrifices in order to give that child the best chance for survival, for education, happiness and prosperity.   The mothers of Albert Einstein, Thomas Edison, and Temple Grandin all worked hard to do the best they could with their children, against some difficult odds, and brought their children to who the world eventually knew them to be. The same is true of Sally and Bobby who live down the street, for the most part.  A parent who will not perform in terms of helping their child to be successful and healthy, is generally an aberration.

               Some time ago, I mentioned the story of Justina Pelletier.    Justina is a Boston area teen who had been diagnosed with mitochondrial disorder.  This was not a diagnosis made by parents, but a diagnosis made by a board certified physician and professor of medicine. In fact, he was an expert in the management of this disorder.    Although this disorder can cause weakness, muscle difficulties, and other symptomatology, Justina had been attending school and had been functional as a teen.    About a year ago Justina had the flu, and her regular physician was not available, and so her parents did what good parents do....  They took their child to the nearest children's hospital, which happened to be Boston Children's Hospital.   Following an examination, the physicians there had her parents escorted from the ER and admitted Justina to the Psychiatric Ward for evaluation for somatiform disorder.  Her ongoing treatment for mitochondrial disorder ceased.   We have no idea, as a reader whether the physicians at Children's Hospital simply don't believe in mitochondrial disorder, or whether they ever attempted to contact the child's attending physician.  Apparently, Children's Hospital has an arrangement with a judge where a physician indicates that the parents are a barrier to treatment and/or a correct diagnosis, and zip........ custody of that child is given to the hospital !    This is particularly disturbing because this was done completely against the will of Justina herself.  For almost a year Justina has been held against her will in an inpatient psychiatric facility.  She has not been free to phone or to visit with her parents as she wishes.  Her visits are at the convenience of her guardian the hospital, and she on at least one occasion communicated with her parents using notes written inside origami animals she made in therapy there and then gave to them.  This sounds like something in a former Soviet prison camp or perhaps something which happened in Germany in the time of Hitler !    Saddest of all, without the treatment for mitochondrial disorder and perhaps in part due to the stress of being held in a psychiatric facility without her parents to advocate for her, Justina has deteriorated in terms of her mitochondrial disorder symptoms. What ever happened to the law which says that children or teens, even those with severe psychiatric disorders, must be held in the LEAST restrictive environment.  (So that they are able to achieve normal development and so that they don't develop PTSD and other disorders the result of intrusive management and isolation from their ordinary support systems.)

            Most frightening of all, the judge in the case has placed a gag order on this case.  The Pelletiers are unable to discuss the case.  Hmmmm.  Take someone's child from them during the course of an emergency room visit and then hold her with limited, supervised visitation for a year, and expect the family not to give interviews ?    The strength of the bond of parenthood is far stronger than the orders of any court.  Most of us would die for our children, let alone spend some jail time in order to get them out of a facility where their primary medical diagnosis was not being addressed.

           I am aware that sometimes in the many years in which I was actively employed as a registered nurse that very occasionally our hospital would seek a court injunction to get a blood transfusion or a treatment for a child for which ALL of her physicians believe she would die if this step were not taken.   These cases were rare, and the judge had a fairly high bar before ordering care families refused.

          This week, Mr. Pelletier was charged with being in contempt of court as a result of speaking of the case of his own daughter !  This young woman needs to be released to care of the physician who originally diagnosed and treated her primary medical problem.  She needs to be returned to her parents at once.  The family's attorney needs to sue the hospitals and physicians who deprived this child of her family, a year of her teen life, and her health during this medical misadventure.

           Does this hospital not see that the needs of children who require diagnostics and treatment are not likely to be met if parents know of the multiple cases of seeming child abduction which have occurred in a variety of Children's Hospitals in the US ?     Children's Hospital in Denver has quite a reputation for child collection !

    Of course, make up your own mind.    These are the links to information in the case, and a link to my original post on this matter.    I am aghast and appalled that the physicians involved and hospital administrators could not construct a better plan of meeting the patient's needs other than what looks like kidnapping to the rest of us.

Information updated to this blog on March 4, 2014:


Ian H said...

Welcome to the new world where logic and compassion cease to exist! I pray that this will be resolved with the best interest of Justina!

JaneofVirginia said...

This is particularly upsetting as the Pelletiers are good parents to their other daughters, one of whom also has a version of mitochondrial disorder. This must also be very difficult for Justina's sisters.

Linda said...

This is disturbing.

Can you give a overview of this disorder and treatment? I read what you gave before, understood, but now have let that information slip right away.

Is anything being done in the way of an advocacy group for Justina?

JaneofVirginia said...

In mitochondrial disorder, every cell in the body is not working to peak efficiency, as the mitochondria are the power plants to each cell. In Justina, the muscular weakness component of her illness is the largest one. The family has another sister who tests positively for the disorder but for whom it has manifest in an apparently milder form. The links I added to the post give the full overview of both disorders mentioned in the post. Somatiform disorder as the ER physician thought, was manifest by the perception of weakness and pain in extremities but is surmised to be of psychiatric origin.
Justina's family has an attorney, but they are under a gag order. Releasing Justina from the hospital could be tantamount to admitting a mammoth hospital mistake which could make them owe millions of dollars to Justina in a later lawsuit, so they aren't falling over themselves to do the right thing. The point is that I have known other families who have lost one or even two children to an ER visit at a Children's Hospital, when a physician with an agenda felt the parent could be a barrier to doing the things they believed were necessary for the child. Friends of mine lost two adopted children to an ER visit several years ago. They had only had the kids for a couple of months in an international adoption. When they came to the ER the kids were admitted to the hospital, placed on a psychiatric ward, and they were blamed for the problems the kids were having when they had them only a few months. The children turned out to have been child soldiers in their country of origin and their psychiatric issues had nothing to do with their adoptive family. The hospital took custody and they never saw the children again. However, they were sent a multi-million dollar bill for the children's care. This happens more often than is known.