"Suffering the Slings and Arrows of Outrageous Fortune"

Saturday, May 24th, Justina Pelletier turned 16:

free justina birthday

She is still in Massachusetts DCF custody, although the Connecticut facility she was moved to is working on reuniting her with her family. On the 24th, there was a birthday party for Justina which her family attended. Also on the 24th, in Boston, was a huge rally in her honor. The media is estimating thousands were in attendance – initial reports said 2,000, later reports estimated 4,000.

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As I look at the pictures and videos from Justina’s birthday party and the rally, serious questions overshadow the joy I feel – joy that Justina is in a better situation, that she had a lovely party with her family and friends, that thousands of people across the country care so much for her.

And I wonder, what was the point of all the separation, the pain, the suffering, the conflict, the lines drawn in the sand? What has been gained?

DCF and the powers-that-be in Massachusetts are clearly trying to extricate themselves from an unpleasant situation. After months of Governor Patrick saying he could do nothing, the HHS secretary comes up with a soft ball plan that creates swift movement towards resolution. The Susan Wayne Center in Connecticut is clearly playing the good cop and moving the situation towards reunification after 14 long, contentious months of zero progress in Massachusetts.

The Pelletiers finally have a way out (hopefully) of this nightmare, although that way should have been provided months ago. They are going along with the reunification plan offered by HHS – they have to visit Justina (duh, as if that is a problem), they have to attend family therapy (they report this has happened), they have  to meet with DCF to discuss the ‘progress’ they are making (like they could avoid this?).  After some complaints from the family regarding how long it was taking to schedule it, they will be fulfilling the requirement to meet with Tufts  on the 30th to discuss Justina’s medical plan going forward and it looks like she could be home not long after that meeting, according to Rev. Mahoney.

Beyond the plan and the new placement and the tantalizing whispers of ‘home’, I still have to ask, what was the point of all of this?

Let’s assume for the sake of argument  that Justina does have somatic symptoms. Let’s assume Linda and Lou have been medically abusing Justina: Ok, they clearly do not fit into the extreme category of Munchausens by Proxy (where a parent takes actions that makes their child sick: i.e. poisons, smothers, etc) …maybe they could be classified as having Factitious Disorder – a broad category in which parents ‘gain’ to some degree from having an ill child or perhaps they just meet the overly broad criteria for Medical Child Abuse.

Mind you, I don’t believe this to be true and do not concede this is what is happening, nor do I remotely buy the concept that these diagnoses are commonplace. Just bear with me for a moment as we ponder this situation…

Assuming that this is a family who is struggling with dealing with a serious chronic illness and assuming they had less-than-optimal responses to said chronic illness…what was gained from this traumatic 15 month intervention by BCH and DCF?

If Justina has somatic symptoms in addition to mitochondrial disease, how has she been ‘helped’ in any way by being separated from her family for 15 months? By being kept in the most restrictive environment – housed in a series of psych facilities with seriously mentally ill youth? By being kept away from her normal life: from her school, from her church, from her friends, from her pets? How has any of this helped Justina get better?

The treatment for psychosomatic symptoms is not anything resembling what they have done to this child. If anything, they have created worse issues than she had before. If she had stress and a crazy family that led to her physical symptoms worsening, she now has FAR MORE stress and a FAR CRAZIER family by virtue of the hostile actions of BCH and DCF. She will live the rest of her life healing from this experience. It will affect her whole life – who she can trust, how she interacts with the medical community, how she views her self. Was the need to intervene worth all the irreparable damage?

If Linda (let’s be honest, this is who the finger is being pointed at here, because moms of medically complex children have a great big target on their backs) ‘has’ this factitious disorder, which is, from a chronic illness perspective, truly one of the most asinine diagnoses conceived of by psychiatry,  and has gained from her daughter’s illness in some way – attention, acclaim, fame, sympathy, whatever – how has this experience helped her problems diminish? Would this type of experience not feed her alleged issues by reinforcing that negative behavior? Have they offered any method of helping Linda cope better?  Have they offered her any kind of support services?

If Linda was not ‘coping well’ with the stress of having ill children, how could having her youngest taken away in such a traumatic way possibly help her cope better? If the family dynamics were less than ideal, how has throwing them into this impossible situation HELPED them improve? This family has been harmed, not helped, by the do-gooders in Massachusetts. They will spend the rest of their lives picking up the pieces.

I am appalled that officials at every level of this debacle are more concerned with their policies, political aspirations and exit strategies than the health and well-being of this child and family. If they actually cared about this child and her family and thought there was a problem, they could have helped instead of taking the actions they took. If we are to believe what BCH and DCF says about Justina and Linda and the Pelletiers is true, it then becomes obvious that they have failed the entire Pelletier family miserably and the entire rare disease and chronic illness population by extension.

Which is worse: that they are wrong about this family and made a grievous mistake or that they are right and, in their self-righteousness, utterly failed the family in every possible way? I think the latter might be worse – I could forgive an honest mistake, if apologies and restitution were given and changes were made to prevent it from happening again. I have a harder time forgiving utter failure from self-appointed, self-righteous experts, ‘omnipotent moral busybodies’ as C.S. Lewis calls them, who claim to know it all and whose policies harm rather than help.

After all is said and done, I end up in the same place I began in February:

Psychiatry needs to clean up its act: drastic changes need to be made to the DSM and to the way the field approaches families in need. They need to stop labeling chronically ill people with somatic symptom disorder and climb out of bed with the pharmaceutical companies. They could also stop being surprised that people do not trust them when they behave in such morally reprehensible ways.

Boston Children’s Hospital bears a huge responsibility for pulling the 51A trigger instead of offering help and support if they believed this family needed intervention. Do they have no ability to offer help to families who are rightfully struggling with the challenges and stigma of chronic illness beyond ripping kids away and locking them on Bader 5? (And, by the way, close down Bader 5 – it is irredeemably toxic.) How about training your people on how to interact with families living with chronic illness and come up with ways to HELP THEM instead of taking their children. Change your pro parent-ectomy climate to a pro family one and maybe you have a shot at people trusting you again.

DCF needs to get itself a medical director and implement well reasoned policies that protect families living with rare diseases. There are ways – good ways, effective ways – this issue can be dealt with from an official point of view. Removal of the child can only be a last resort and when it is necessary, offer real solutions towards reunification. Inject some common sense into the department and see how it frees you up to take care of the kids who need your protection.

When all is said and done, I am disgusted. Disgusted at the waste: waste of money, of resources, of precious time, and, most of all, of a child’s humanity and dignity.

And I still do not know what the point of all this was. I wonder if anyone really does…

 

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Comments on: "What was the point? #FreeJustina" (8)

  1. Thank you for pointing out the obvious: somatoform disorder or not – the parentectomy was a counter-productive abuse of power.

    The delay in returning Justina to her parents is just exacerbates the initial crime. Massachusetts authorities may imagine they’re saving face, but they’re just making themselves look more and more depraved with each passing day.

    • Hmmm, you put it much more succinctly than I did but, yes, it was an abuse of power in the gravest sense. I am sure MA just wants out. They want to find a way out that does not make them look bad. What they don’t realize is that they already look bad and nothing they do will erase the damage they have done.

      Justina is the one who will pay the price for their idiocy but I sure hope the Pelletier’s legal team makes everyone involved pay.

      Thanks for commenting!

  2. Leanne Skrip said:

    We have just been through a similar situation with our family in another state, in case anyone thinks this type of behavior via pediatricians and DCF is rare or limited to Boston. The only difference was we had a foster family that advocated for our son, and a judge that still held a legal standard (though we were never given a trial). We “only” lost our son for 68 days, then another 3 month investigation. The accusation was Munchausen because our son was healthy and thriving. When he got sick, the doctors started lying about and hiding lab results, then refusing to run tests altogether. We had five psychologists on our side, one of whom regularly does evals for the state, and all were discarded, replaced with one that said this must be Munchausen because all the psych evals were normal. We were not allowed a second medical opinion until after a settlement – our only option to get our son back if we did not want to wait another 3-6 months for a trial. There is a hopeless feedback loop between a single psychologist, the almighty doctor, and a single social worker. We were finally given back a child that will have lifelong physical and emotional repercussions to this event, and our family has been destroyed – emotionally, financially, socially. All this because DCF, doctors and psychologists that work together are more concerned with protecting themselves and each other as colleagues and legally – at the terrible expense of the children and families they are supposed to be protecting.

    • I am so sorry to hear of your experience, although I know it is not uncommon. Your experience is exactly why I am involved in the #freejustina movement. Anyone who thinks it couldn’t happen it fooling themselves.

      Psychiatry needs to clean up its act – the damage they do to innocent people is incredible. I am so glad you got your son back and that all the stars aligned for it to happen. I pray that he heals and you all are able to put the nightmare behind you. I would suggest that you get in contact with the Pelletiers as they work on Justina’s Law. They need the voices of the victims to be heard, so change can be made.

      Thanks so much for commenting and sharing your story!

  3. I have mitochondrial disease. I was told for years this is all in my head, I’m lazy, im making it all up because I look online and automatically think i have these problems. I say to them get educated, stop the politicking and consult with highly educated for rare disease doctors before you ever make a psychologist evaluation on a patient. Never assume it is just and only a mental disorder. There are tons of rare diseases out there that the research teams and genetics teams are just hitting the tip of an iceberg with. About 100 years ago people with MS were thrown into a psych. ward just because the doctors couldnt figure it out. I thought we were out of the primitive stage of medicine in human existence and have entered into an informative age of DNA. It looks like medicine is still in the primitive stage and being taught this way. The doctor/doctors who dx’ed Justina with somatoform disorder should be fired and have his license revoked. dcf (yes in lower letters because i have zero respect for them for many reasons) and the governor needs to be ousted. Stop worrying about YOUR politics (narcissism, sociopath, psychopath ) and YOUR obsessive compulsive disorder with a man made invention called money. I thought human life was more precious. I guess human life is considered a dime a dozen. Doctor Korson is a top mito. dr in the U.S. Why didn’t bch go to him first and ask questions? I hope the Pelletier family sues the doctor who admitted Justina to bch, bch and dcf for everything they have and wish to have and win because that is the only way they will wake up is to hit their wallets. What the state of mass. has done to Justina is rob her of her precious life. When under such stress it causes damage to the mitochondria even more so. She will never or slightly improve(on proper meds) from that. Just because you are not educated enough about rare diseases don’t ever assume that it is all in someone’s head. Get off your lazy, uneducated, and its all about me behinds and consult with a rare disease doctor. This goes for 98% of all doctors out there and all states. There is zero excuses for this.

    • It always makes me so mad when I hear people talking about being told ‘it’s all in your head’ – you are lazy, crazy, stupid, attention seeking, etc… It isn’t that hard to see that medical conditions like Mito and EDS are very real, yet doctors seem to struggle with that concept.

      I HATE that Justina has suffered so much, but I believe that her suffering is going to bring real change. No, it won’t make everything perfect – some of it is about people’s hearts and minds and no legislation can change that – but we have a chance for real changes and that is a good thing.

      Thanks for commenting!

      • I feel so sick about Justina and her family and the suffering they put upon them. It is bad enough just to deal with mito. alone but to add all of this into the factors made it horrific.
        I hope and pray there will be a huge change in the medical system but money and politics is very hard to overrule. Fight on.

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