Living near Boston, one frequently marvels at the number of prestigious medical centers the city boasts.  People come from all over the world for treatment at Mass General, Beth Israel Deaconess or the Lahey Medical Center.  Boston has seventy-five hospitals, with fourteen of them listed as “top Ranking” hospitals by the U.S. News and World Report ranking system.  Unfortunately, Massachusetts also has one of the worst performing child protective services in the country, an organization currently under fire for things like losing five year-old Jeremiah Oliver, who is now presumed dead, as well as allowing those convicted of rape, murder and assault on children to reside in foster homes caring for at-risk children.  Now, the Department of Children and Families (DCF) is also party to state-sponsored kidnapping on behalf of Boston’s Children’s Hospital (BCH).  And thanks to a gag order imposed by a local judge, the case of Justina Pelletier is making very little noise outside of the state.  And frankly, very little in the state as well.

Following their doctors orders?

Following their doctors orders?

I first became aware of the story last fall when a local Connecticut Fox station started to run segments on the case of Justina Pelletier.  Justina was diagnosed with a rare condition called Mitochondrial disease.  It’s the same disease that affects her twenty-five year-old sister.  Her specialists at Tufts Medical Center, another highly ranked Boston hospital, had been treating her for the disease for years.  However, when she came down with a case of the flu in February of 2013, she was admitted to BCH in Boston to see her specialist who had moved from Tufts to BCH.  BCH assigned a different team of doctors who questioned her original diagnosis and immediately ordered her current care regimen halted.  In fact, one member of her new team of doctors remarked that he didn’t believe in the disease and diagnosed her with “somatoform disorder”, all in her head you see.  And implicated her parents in her failing health suggesting Munchausen’s.  Her parents disagreed with the new diagnosis and requested that her original course of treatment continue.  They were escorted out of the hospital and lost custody four days later.  To the DCF no less.

Justina’s health has worsened.  In the December before she came down with the flu, she was healthy enough for skating; now, after almost a year of custody and under the care of her new team of BCH doctors, she is paralyzed below the waist.   Remember, this is occurring under the care of BCH with the authority of the DCF.  And even though every prescription her parents gave her, every procedure she underwent were all approved and prescribed by her specialists at Tufts, BCH and the DCF are accusing the Pelletiers of “over-medicalizing” their daughter.  The court, in the person of Judge Joseph Johnston apparently agrees, even imposing a gag order on the family the month that the Fox News report originally came out.

Questions, so many questions.  But with the court effectively shielding BCH and the DCF from any scrutiny, all one is left with is the implication that they must know something horrible about the parents that would persuade a judge to not only continue to separate a young girl from her family, but remove her from the care of the specialist who made the original diagnosis that prompted the treatment in the first place.  Tufts would not allow Dr. Korson to speak to the press, but in an email he sent to the Pelletier’s lawyer, he expresses his concern for the family;  “I am dismayed. … It feels like Justina’s treatment team is out to prove the diagnosis at all costs. … The team has demanded that Justina be removed from the home. … This represents the most severe and intrusive intervention a patient can undergo … for a clinical hunch,” writes Dr. Korson.

If the Pelletiers are “over-medicalizing” their daughter under the care of a specialist, one that is now affiliated with BCH, does that mean Tufts, BCH and Dr. Korson are all complicit here?  Were Dr. Korson and Tufts committing malpractice?   If you follow the advice and care regimen of your specialist, is that specialist in any way, at any time, liable for the consequences rising from another alternate diagnosis?  Is Mitochondrial disease real?  Are the Pelletiers being punished for treating symptoms of somatoform disease or for causing those symptoms?

Again, too many questions, too little sunlight.  Unfortunately, now that the DCF is involved, parents are going to pause before admitting their children to either BCH or Tufts.  I’ve written many blogs advocating for protection of children and I have personal, very postive experiences with BCH.  But this case is dramatically different then the usual episode where a child is presented to a specialized health care provider, such as BCH, and the professionals immediately understand that the parents or care givers are the source of the child’s malady.  This child was under the care of another team of highly trained, highly rated experts and the parents are now suspect for what?  Following doctors orders?  With the ridiculously inept DCF, already responsible for the death of children in it’s care, the ultimate arbiter?

Unfortunately, this only gets solved in the press.  The Pelletiers are ignoring the gag order, speaking to Glenn Beck and Megyn Kelly because they fear for their daughter’s life and because of the punitive, limited access they have to their daughter.  It doesn’t get solved by giving DCF carte-blanch power to separate this family and dictate the diagnosis and treatment.  And it doesn’t get solved by BCH hiding behind a gag order.  The parents have spoken; it’s readily apparent that Mr. Pelletier is willing to go to jail and into financial ruin over the welfare of his daughter.  The gag order needs to be lifted and the press needs to ask BCH, DCF and Tufts just what the hell is going on here.  How can two prestigious hospitals come to such disparate conclusions and the only people being punished are Justina and her family?

This case illuminates several glaring and contradictory stances.  If we are to believe BCH, they called in authorities because they suspected the parents of child abuse for subjecting their daughter to invasive medical treatments and denying her mental health therapy.  Is this the case for all treatment regimens that may be confounded or difficult to diagnose?  Why don’t all psychiatric diseases get the same scrutiny, such as gender identity disorders? Are these parents more caring than the Pelletiers?  And before you start with the “you’re a homophobe, you’re a hater..blah, blah, blah” crap, I ask the question in earnest.  If you’re a parent following the advice of your physician and the disease is rare, hard to diagnose or even psychological, at what point does the state get to jump in and decide which diseases and related treatment regimens are unacceptable to the point of confining the victim to a psychiatric ward for over a year with her health failing, while limiting the parents’ visitation rights to a one hour supervised visit once a week? If it’s a case of diagnosing Munchausen’s versus Mitochondrial disease, one has to assume that the specialists at Tufts are every bit as qualified to make the diagnosis as the folks at BCH.

Given the political nature of DCF and the piss poor oversight of the department by Massachusetts legislators and courts, families would be prudent, if not correct in trying to find other care facilities for their children.  The shame here is that children are going to suffer and/or die needlessly because of the fallout of this case.  BCH, DCF and Tufts are all to blame here.  Because from my non-professional diagnosis, either Tufts is right and BCH and DCF are wrong; or Tufts originally erred. I don’t have to be a brain surgeon to figure this out.

Someone needs to be held accountable for the suffering imposed upon this little girl, whether it points to her parents and Tufts or BCH and the DCF.  My fear is that Justina will end up just like Jeremiah Oliver.  A victim of the overreach of government into the lives and responsibilities of parents and their children.

It takes a village to kill a little girl….