"Suffering the Slings and Arrows of Outrageous Fortune"

https://www.facebook.com/photo.php?fbid=640906469309255&set=o.223981364392888&type=3&theater

Yesterday I posted about Justina Pelletier and how she is being held against her will and against her parents wishes. Her family was in court yesterday, trying to get custody back from Massachusetts Department of Children and Families. Sadly, this update is not a positive one but we cannot allow this case to be forgotten and it must be spoken about.

The decision by the judge was to send Justina to foster care, where she will still apparently not be receiving medical care for her very real medical problems, instead of being returned to her parents as we had all hoped. There is another court hearing on March 17, so perhaps there is still hope – and the family has additional legal counsel that an anonymous benefactor is providing, so that is a positive development. The father, Lou, still faces contempt charges for ignoring the gag order and will be in court on March 24. There are serious questions about the legality of the gag order and he and his lawyers are doubling down on it. At this point, he feels that jail time would be worth it if he can save his daughter by going public – certainly, abiding by the gag order for the last 6 months has not helped Justina so he has to try anything he can to save her.

There are so many things that are wrong about this case that it is hard to get it all down in a cohesive fashion – but I will try to hit the highlights…

The neurologist who overturned Justina’s previous diagnosis of mito was apparently only 7 months into his residency and has a vested interest in the diagnosis of somatoform disorder. Treatment for this questionable diagnosis is profitable and kids with rare conditions, good insurance and involved parents seem to be ripe for enslavement in their psych program.[Justina reportedly spent 10 months on Bader 5, a locked psych ward at Boston Children’s. The costs associated with long term in-patient care is significant at best. If the cost of being in-patient is $1,000 per day (and I wouldn’t be surprised if it was considerably higher), we can easily do the math and figure out how much the hospital profited.]

Justina was sent to Boston Children’s by her mito specialist specifically to see a GI specialist who had previously seen her and had since moved to BCH. Instead, she saw this neurologist who has ruined her life because ‘he didn’t believe in mito’. Her parents wanted a second opinion and were denied, then slapped with a charge of medical child abuse and lost custody within hours. BCH ignored the previous diagnosis and her mito specialist was ignored and silenced. Once Justina was taken from her parents’ custody, her mito specialist was prevented from speaking publicly about her case.

Typically, medical child abuse is charged when parents refuse to seek medical treatment for an ill child, not when they are following, in good faith, the medical advice of an insurance approved physician (who happens to be from another hospital) and are simply seeking a second opinion when faced with a doctor who labels their child with a mental disorder. There seems to be no accusation of Munchausen’s by proxy and there has been no evidence that the Pelletiers are bad parents.

The medications Justina was on were managing her mito symptoms – vitamin cocktails that are so crucial to helping the body function. Obviously, I don’t know her entire med list prior to BCH, but clearly the vitamins were not toxic and offered no threat. One could EASILY argue that the psychiatric meds that she is now on are far more dangerous than the meds she was previously on. The few medical procedures she had over the years, were ordered by doctors and approved by insurance. BCH and DCF claim that her medical treatment was excessive. So, a tonsillectomy is considered excessive treatment? Exploratory bowel surgery that found and treated a potentially deadly congenital band wrapped around her intestines is excessive? My daughter has had her tonsils out, an appendectomy, a scope, a gastric emptying test, several MRIs and is on a ton of meds. By the standards set by DCF in this case, I should be very afraid that some random doctor we happen to see in the future could decide I am medically abusing my child.

Then there is the fact that Justina was an avid and active figure skater prior to her hospitalization and now, after a year of BCH care, is confined to a wheelchair and is losing strength daily, seems to point to the efficacy of her mito treatment and the sheer folly of the psychiatric treatment she has been receiving.

Justina was active prior to her hospitalization in Feb of 2013, as the picture on the left shows. Quite a contrast from the obviously weak and ill child pictured on the right.

This child and her family are not even residents of Massachusetts, they are from Connecticut, but Justina is now in the custody of the State of Massachusetts because they were sent to Boston Children’s for treatment. How is that even possible? The governors of both states are saying it is out of their hands. No public officials seem to want to get involved and DCF seems to be all an powerful entity. There is a gag order (although it is highly questionable) that prevents the family from talking about it and DCF seems intent on keeping it all quiet. The parents are on their own fighting an all powerful and uncaring government which is intent on silencing them and retaining control of a helpless child.

There are some legal shenanigans that bring into question everyone from the involved doctors at Boston Children’s Hospital to DCF staff and even the judge himself. The way I see it, they messed up, big time, and know it. Now they have a desperate need to ensure that their misdeeds don’t get brought out into the light of day. They want to bury this story, perhaps quite literally. If you divorce yourself from the notion that DCF has the best interest of Justina at heart, it is not at all difficult to believe that they would be fine with this child literally dying to cover up their wrong-doing. The minute Justina is back in her parents’ custody, it all comes out and the lawsuits start. They don’t want that and this child can be sacrificed on their alter of ‘we were only doing our job’. A dead child cannot testify against them.

Justina is not the first child to suffer this fate at BCH – she is one of many, one of a pattern of kids with rare conditions being forcibly taken away and essentially experimented on without parental consent, not to mention being cash cows for Boston Children’s. If not stopped, the abuse will continue and more children will suffer and more families will be torn apart. Obviously, we all want children who are actually being abused to be protected and there is a real need to do so. But, the only abusers in this case are the authorities at BCH and DCF. Linda and Lou Pelletier have done nothing but try to provide their daughter with the best medical care, they have done nothing wrong and are paying a high price for a broken, evil system.

I don’t know the Pelletiers – I am many, many miles away in another state. I have never met them and probably never will. But, I am taking this case extremely personally and I believe we should all care. Deeply. Because if it can happen to Justina, it can happen to anyone. When I told my husband about Justina being sent to foster care, he looked at me and said, ‘That could be us.’

Yes, it could. It could be anyone with a chronically ill child. The hashtag could be #freeEmily and it could be my husband and I fighting Goliath with a sling shot… when you put your child’s name in place of Justina’s name it puts a whole new spin on the situation. For those of us with sick kids, it is no leap at all to put ourselves in the Pelletier’s shoes. However, any parent, even those with healthy kids, should be able to imagine what it would be like to have your child stolen from you and be powerless to save them.

This is a travesty that must not be ignored. It cannot be swept under the rug. We must keep it in the light and fight for Justina with all the tools at our disposal, because it could so easily be any one of us. As a society, we are only as good as we treat the most helpless among us and we have nothing to be proud of in that regard at the moment. A child with a chronic, rare condition is not a disposable item to be profited from; she is not a guinea pig to be experimented on and thrown away.

They came for the Jews,
and I didn’t speak up,
because I wasn’t a Jew.
Then they came for the Catholics,
and I didn’t speak up,
because I was a Protestant.
Then they came for me,
and by that time there was no one
left to speak up for me.

Replace ‘Jews’ with ‘the chronically ill kids’, replace ‘the Catholics’ with ‘the parents who fight for their kids’ and you have a clear picture of what is happening to our society. This is not the world I want to live in. How about you?

 rainbow scroll 2

Here is one article about the results of yesterday’s hearing and another with video from Megan Kelly on Fox… Here is an article about the pattern of abuse at BCH.  Another good one. And here is a good overview of the case. There is a facebook page approved by the family that provides updates and there is also A Miracle for Justina on FB.  Here is a FB profile pic and here is another version to use for sharing this story on social media. By using #freeJustina and #justinapelletier hashtags, we can get these trending and garner more attention. Here is the web site where you can donate to the cause if you are able. The family is having severe financial struggles as a result of this year long legal battle.

There is little coverage of this story on mainstream media, but Glenn Beck has been following this story closely recently and now Fox News is starting to cover it; it is starting to get out more and more in both the mainstream media and social media. If we stand together, they will not be able to get away with this and we can save Justina. And, in doing so, we will make this scary world a little safer for our own vulnerable kids…

Please continue to pray for the Pelletiers, for Linda and Lou, for Justina’s sisters and for Justina herself – this is a burden no family should bear. Pray that Justina can hold on until she can get medical treatment. Pray for wisdom for their legal team and  for the judge and the people pushing this case.

rainbow scroll 2

I am planning part 3, which will discuss how EDS families are also being torn apart by the same types of accusations.

Advertisements

Comments on: "Free Justina Part 2" (10)

  1. Very well written Beth! Let us hope Justina will be home soon. Let us hope this becomes a national discussion and we can stop the Hospitals and CPS from stealing our children purely for profit. The fact that it is happening at all? And no one has addressed it? Shocking!!! I did not think this abuse of humans could happen in America. Sadly it is rampant.

    • Thanks! It seems like the situation is starting to snow ball and it is being noticed nationally. I think all you have to do is follow the money and you come to the inescapable conclusion that this child has suffered for certain people at BCH to profit. And, with the ‘child abuse experts’ from DCF as a BCH department, they have ALL the power. It is unbelievable, yet, here it is happening. I didn’t even go into the details her father has shared about how she has been tortured for all of these months and how she has been isolated from everything that matters in her life, from music, family, friends, TV, and a normal life – essentially in solitary confinement, punished when she is caught sneaking notes to her family. When I see that picture of her in that wheelchair, I see my daughter and want to weep for her. I cannot imagine the pain that whole family has endured.

      And, sadly, it is only going to make people with ill children hesitant to take their child to the doctor for fear that they will be next. Hopefully, Justina’s case can pave the way for changes in the system – perhaps a ‘Justina’s Law’ to protect our kids from the wolves who call themselves doctors.

  2. Wait.. the neurologist was in his residency? Isn’t that while they are still training? This is even more atrocious than I already understood it to be.

    If Fox News picked it up, hopefully it won’t be long before this is all over mainstream media.

    • Apparently just 7 months out of med school and he was from the Netherlands. Those were details I just recently found out. Yeah, it is pretty bad. Honestly, I don’t understand how he was even allowed to make such a decision without SOMEONE in authority saying, hmmm…maybe we should think about this for a minute. He made a diagnosis of somatoform disorder in 12 hours, without consulting her mito specialist, the GI doctor she came to see or even studying her medical records. To this day, Justina has not seen the GI doctor she went to see, which is incredible to me. IF somatoform disorder ACTUALLY exists, and I do NOT grant that it does, it would literally take months or years to diagnose it, taking time to rule out every possible legitimate medical disorder. Yet this ‘baby’ neurologist makes a diagnosis in 12 hours and removes the child from her parents custody because they ask for a second opinion. The more I hear, the worse it gets. And yes, I think the story is gaining momentum. The worry is, that this momentum won’t be enough to save Justina in time.

      • To be someone with a rare, complicated medical issue and to be born into a loving family is a blessing. She was receiving support, love, and the best care they could get her. There was no “you’re crazy” or “it’s all in your head” or “just tough it out”. As you probably know, that is not a given for all kids with chronic illness.

        She already endured so much physically, now she is being forced to endure unimaginable emotional pain. I wouldn’t be surprised if after all of this trauma, she has psychiatric issues to worry about. How will she ever trust a new doctor? I know if one day I went to the doctor for a second opinion, then he kept me against my will and wouldn’t let me see my family except for small windows of time… I would likely end up with a minimum of anxiety and depression despite having an awesome family who keeps me going and thinking positive. I would probably be scared to get help for those disorders because I couldn’t trust that the doctor wouldn’t lock me up. I would think some Post Traumatic Stress Disorder is inevitable when you’ve been held against your will (as a child!!) and denied medical care… It makes me nauseous just typing this.

        She already had a physical illness, they’ve likely given her a mental one too. 😦

      • Sorry for overtaking your comments section! Does anyone know if they’ve been allowed to have testing done (and accessed) to check on the status of her mito disease and any other health conditions?

        • Do not apologize! I welcome your thoughts and I imagine that others are thinking the same things, so it helps to have this discussion for others who may be reading.

          My understanding, and bear in mind that I only know what I have heard and read, is that as soon as this ‘doctor’ rejected the mito diagnosis and slapped the somatoform label on Justina, all other treatment and testing was no longer sought. Because, if it is somatoform disorder, all that other stuff (looking at treatments, treating the symptoms, seeking a second opinion) encourages one to think it is real, when it is really not.

          So, I believe I heard the dad say in an interview that they were told that there could be no more discussion of mito or second opinions and the entire focus would be on making Justina understand that it was in her head. So, when her bowels didn’t work after the mito treatments were denied, she was forced to sit on the toilet for hours because her motility wasn’t poor, it was in her head and she needed to understand that she could just go.

          Since mito affects multiple systems, I would assume that all of her symptoms would be ignored in favor of the somatoform label. I don’t know that for sure, but considering her current condition, I think it is probably a safe assumption.

          Once the somatoform label is in play, it changes everything and all other options can no longer be on the table. The psych folks had to be all in or admit that they were wrong. And, as a result, they have sat by and watched this child fade away before their eyes as they tried to torture her into believing what she was feeling is in her head.

          • Thank you for the education. You saved me quite a bit of Googling that I was planning on doing tomorrow!

            I know how infuriating it is for me a certain times when people tell me, “If you’d just ________ you’d feel better.” I cannot imagine someone actually FORCING me to try their treatment/technique that in no way helps my condition.

            I wonder what she is thinking? I hope I never know what it is like to be a parent in that situation. You’d want your daughter to know you’re fighting for her and that you want her to hold onto any fight she has left in her for her health, but you wouldn’t want all the nursing staff to resent her and treat her poorly…

            I hope she gets out of there, gets back to functioning, gets a book deal (if she wants of course), and is able to put on the record what she has been put through. Then, she can have some time… maybe on an island with no demented doctors in sight… where she doesn’t need to worry about anything but enjoying life as much as possible with her chronic illness.

            I thought I read somewhere once that one of the sisters had mito issues. If that is true, I wish that counted for something!

            I appreciate the updates on this and I apologize for any errors in this comment, my brain doesn’t work well this late!

  3. N987SA said:

    Mark Korson is no doctor, he is actually a liar, a charlatan, a fraud, and a quack at the best and possibly much worse. His purported tales of ‘dysfunctional mitochondria’ are fake fibs made by him and other ‘medical professionals’ like him. We are helping Justina, nay, we are SAVING Justina. Her mind has become a battlefield and it is under vicious attack by the Warlock Korson, her family, her friends, and her life before us. We will win this MindWar.

    Hail Schäfer! Hail López Rega! Hail Moreno Gonzalez!
    Hail Sendorsee!

    I am N987SA and I speak the Truth.

    • You speak something, but I seriously doubt it is ‘truth’, my friend. Your comment is so disjointed and, frankly, insane that I hardly know how to respond, but I am going to approve your comment because your rantings deserve to see the light of day – if only to warn friends of Justina how certifiably nuts the ‘other’ side is. Calling DR Korson a warlock is hardly a reasonable, logic argument to make and does not commend you as a rational human being. I would accuse you of an ad hominem attack but that would be an insult to ad hominem attacks and illogical idiots around the world.

      I would point out that your version of ‘saving’ Justina will end up with her funeral, but I guess there is no point using facts with someone of your nature. ‘Facts? I don’t need no stinkin’ facts’, said N987SA.

      You are welcome to your misguided opinion, but anyone with a brain knows that mitochondrial disease is very real and IF somatoform disorder is real, which I DO NOT grant, it, by definition, it requires ruling out every possible real medical condition before making an accurate diagnosis. That was not done in Justina’s case. The liars, charlatans, frauds and quacks in this case are the authorities who have kidnapped Justina and are letting her die. And her current, FAILING medical condition points clearly to how her previous treatment for mito was quite effective and her current treatment for somatoform disorder is FAILING.

      You are right about one thing – Justina’s mind HAS become a battlefield. A battlefield created by BCH and DCF for their own profit. Do you have any idea what it is like to experience REAL pain and to be told it is in your mind? That it is not real? That you are crazy? I wouldn’t wish that on even you and Justina has certainly done nothing to deserve such torture.

      You are welcome to comment again, but, if you do, please speak as a rational person and make an attempt to use logic. If you comment further, in the same insane spirit, I will delete your comment and block you.

      #freejustina

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: