It’s spring break for many school age children. I have a email box full of photos of kids who are at the beach, families skiing in Colorado, and my own neighborhood sounds like an endless summer play day full of children’s voices. But for Justina Pelletier, there will be no spring break, there will be no trips or back yard pick nicks, there will be no freedom, her crime, having a medical mitochondrial disorder a genetic disorder that affects how cells produce energy and can wreak havoc on nearly all of the body’s life-sustaining systems
Her spring break will be spent locked in a residential program in Framingham which is only a tad better than where she spent the last year. That year was spent locked in a psychiatric ward that, according to her father is so bad, it makes One Flew Over the Cuckoo’s Nest look like a nice place to be.
Justina, a fifteen year old girl, has spend all this time without a phone, a television, no contact with her priest or allowed a private mass, no form of education, and limited family contact of one supervised hour per week. While you are still scratching your head and saying, “hey wait, my child has a mito issue, it’s not a psychiatric issue” and I saying, “I know right, mine too!” This is why we all need to learn how this happened, it could have been anyone of us who innocently sought medical care for our child.
The time line breaks down like this. According to Patricia Wen (of the Boston Globe), Justina had been a patient of Dr. Mark Korson, a metabolic disorders specialist and chief of metablosim at Tufts Medical Center, for about 3 years. When Justina started feeling sick in 2010, her parents took her to Tufts for an evaluation. She eventually came under the care of Korson, who diagnosed her with the same disease as her sister Jessica, then treated her with a “vitamin cocktail” and a number of other prescription medicines. He had diagnosed her with a mitochondrial disease that caused her to have trouble eating and walking. During a particularly scary spell in February 2013 during a bout of flu, he told her parents to take her to Boston Children’s to see a former Tufts colleague of his, a gastroenterologist. They did just that. What follows is a nightmare that seems to have no end.
Justina was taken by ambulance to Boston Children’s, where a young emergency room doctor told the family that he “didn’t believe” in mitochondrial disease, according to ABC reports. A medical team at the hospital came up with a new treatment plan, which according to Justina’s Father, Lou Pelletier was created without input or consultation from doctors from Tufts.
The new plan stated that Justina’s “medication regimen will be simplified with a gradual reduction of medications to a small set of essential, non-detrimental, modestly dosed medication with limited side effects.”
The family refused to sign this new plan and attempted to check Justina out of Boston Children’s on Feb. 14, 2013. The hospital responded by accusing the parents of child abuse for over-medicating their daughter and refusing to give her access to mental health therapy. Justina, according to Boston children’s did not have a mito issue, but a hypochondriac like disorder called Somatic Disorder.
The state then assumed custody of the girl. The Pelletier’s say they are “frustrated” about the fact that they are no longer allowed to make medical decisions for their daughter.
So what is Somatic Disorder and how could doctors diagnose it so quickly? According to the DSM-5 “Somatic symptoms disorder (SSD) is characterized by somatic symptoms that are either very distressing or a result in significant disruption of functioning, as well as excessive and disproportionate thoughts, feelings and behaviors regarding those symptoms. To be diagnosed with SSD, the individual must be persistently symptomatic (typically at least for 6 months)”.
Now, Justina had only been at Boston for a few hours, not even a week and a doctor who had never met her suddenly decides that Tufts is wrong and Justina has a mental disorder and is choosing to make herself sick. I guess the fact that only one month before Justina had been in an ice skating competition means nothing, or that she had her own medical doctors who knew her and her family well and had treated her sister successfully.
In an attempt to leave the hospital with Justina, the Pelletier Family was swarmed by security, and Justina was whisk away to a psyc ward.
Incredibly, over the next year as the Pelletier Family fought to get Justina back and into get her into proper medical care, they have lost at every turn. Currently Justina, a one time competitive figure skater, is so weak that she is wheelchair bound. Her hair is receding and falling out. She is now two years behind in education, as she did not complete last year and has had no educational services for the school year of 2013-2014 either. It would seem too, if the Pelletier Family had been abusive to Justina, that under new care she would have thrived, not regressed; she would have made progress, not lost two academic years due to lack of school books and a teacher, and she would be telling DHS how safe she felt in their care, rather than sneaking messages to her family about mistreatment.
Reports that Justina’s father has been threatening, are no surprise to this Momma. Take my child in an ambush, tell me (and them) they are not sick but have a mental disorder, then place them in a mental ward with nothing and see if I didn’t go ballistic as well. The Pelletier Family remained quite for several months but as time progressed and they watched Justina grow worse, they went public. Publicity has worked in that they have been interviewed by former Arkansas Governor-turned-talk-show-host, Mike Huckabee. Well known Dr. Phil McGraw, pressured by phone calls and emails, looked into the situation and came away as upset as the rest of us, shocked that a hospital could kidnap a child and use DHS to keep parents away, all while refusing the child proper medical care.
What has not worked: freeing Justina. Judges have sided with Boston’s Children’s Hospital despite no evidence to abuse in the home, or wrong doing on the part of the Pelletier Family. It seems once DHS and a childrens hospital have your child, you are not getting them back.
As of Friday April 4, 2014 Bill HD4212 written by the MassRessistance Group was filled in Massachusetts Legislator to free Justina and return her home to her parents. The hope was to allow Justina to be free for Easter and have the homecoming she and her family deserve.
The name Justina means, “justice, right, fair” quite fitting for a sweet teenage girl who got sick one day and found herself captive in front of a nation and a year later still holding on to hope to simply go home. For the Pelletier Family, watching this saga play out in courts, on the national news and on talk shows, this situation must feel like a horrible nightmare. My only hope is that Justina will get the justice she more than deserves and some day she is able to share her side of the story. For now my hope and prayer is that she is physically able to hold on, mentally she has, and that is enough to show me, this child had no mental illness ever at all.
To support Justina and her family you may send a card to:
C/O Liberty Counsel
P.O. Box 540774
Orlando, FL 32854
For more information on the Justina Pelletier case, you can watch clips of shows on youtube. Here are a few links.
Most of all, learn from this. Any parent with a child could at any point disagree with a hospital or doctor over the care of our child. Ask questions, and never all your child to be transferred to see another doctor unless you are sure the doctor you are going to see, will meet you at the door. Paranoid? No, just prepared and a bit wiser after following Justina’s story for the past year.
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