Lego Booby Traps and Never Ending Laundry
. . . it may not be the Hallmark commercial we meant to sign up for, but you and I know that we’d choose it all over again in a heartbeat. Parenting may mean more pukey sheets and less sleep than we imagined, but our children are warm, fed, and most of all loved. If the Department of Child and Family Services (DCF) showed up at our front door, we’d think they got the wrong address.
But what if they didn’t.
What if – despite no indication of neglect or abuse – they took our children from their beds and placed them in the system? If it sounds far-fetched, let me tell you a story.
Justina Pelletier is not your average 15 year old.
She’s spent most of the past year locked up in a state psychiatric ward against her will, without the consent of her parents, and against the medical advice of her longstanding treating physician. Her family has nearly gone bankrupt trying to get her out. (source)
Her dad Lou is defying a gag order to tell her story on ABC News, FOX News, the Glenn Beck show, and many other media outlets. When FOX News reporter Megyn Kelly asked him why – and whether he was worried about the consequences of speaking out – he replied “I’m saving my daughter’s life. I’m not worried about the consequences to me.” (source)
Why does the Pelletier family fear their daughter is at risk in the state’s care? Because she’s gone 13 months without the medical care Dr. Mark Korson – Chief of Metabolism at Tufts Medical Center and former treating physician to Justina- says she needs. In addition she has been removed from school and not been provided any supplemental education, nor has she had access to religious clergy despite the family’s request. If you haven’t been following the story, here’s what you need to know:
Anatomy Of A Legalized Abduction
A few years ago Justina was diagnosed with mitochondrial disorder, which is a “disruption in the cellular energy centers of our bodies, the mitochondria.” The “body’s demands exceed the body’s ability to supply enough energy to live and to thrive. For mito patients, it’s more than just being tired. It’s never having adequate fuel to operate necessary functions of our body. Justina’s gut stopped working a couple of years ago, a common problem for mito patients, resulting in a tube to help her digest and eliminate food. Mito patients also struggle with muscle weakness, pain, memory loss, erratic blood pressure, vision problems, hearing problems, and debilitating fatigue.” (source)
Despite all that, she was able to ice skate competitively, attend school, and live a relatively normal life. That all changed last year.
“When Justina got the flu in February 2013, her parents acted quickly. They knew that people with mitochondrial disease can decompensate rapidly when physiologically stressed from illness. Their primary mitochondrial disease doctor at Tufts Medical Center encouraged them to go to Boston Children’s Hospital where their gastrointestinal (GI) specialist just relocated. Justina and her parents made the 3-hour drive to Boston with hopes of a short wait so their GI doctor could help stabilize her.” (source)
So we’ve got two caring parents following the guidance of their daughter’s physician – not exactly a red flag if you ask me. How do we get from here to parents believing their child was kidnapped? As it turns out, it’s pretty easy.
Dr. “doesn’t believe” in Mito
During the admission process an ER doc – who had been out of medical school a whopping 7 months – told Justina’s parents that he “didn’t believe” in mitochondrial disease, and instead believed she had somatoform disorder, “a psychiatric condition when a person experiences physical pain for which no known medical explanation can be found.” (source1, source 2)
According to this article, “The case highlights a growing concern among those with rare diseases and autoimmune disorders that physical symptoms that cannot be explained will be dismissed by doctors as psychosomatic.” (source)
The Pelletier’s disagreed with BCH’s diagnosis and refused to sign off on the proposed treatment plan, so Boston Children’s Hospital called DCF and accused them of medical abuse. Before the Pelletiers realized what was happening, Justina was a ward of the state.
“While all the security guards were showing up, we actually called 911 and said our daughter had been kidnapped by Boston Children’s Hospital” said Lou Pelletier. (source)
Six weeks before her admission she was ice skating competitively . . .
Now, 13 months later, she’s in a wheelchair. (source)
Her parents, who are allowed a one hour supervised visit each week, say her condition is deteriorating rapidly. Earlier this week a hearing was held, and the judge decided to place Justina in foster care rather than return her to her family.
“I am dismayed. … It feels like Justina’s treatment team is out to prove the diagnosis at all costs. … The (Boston Children’s Hospital) 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,” wrote Dr. Korson, the Tufts Chief of Metabolism who was previously Justina’s doctor, in an email. (source)
“I have a right as a U.S. citizen to take my daughter to what doctor I want to, and it’s been taken away,” Linda Pelletier told FOX News.
Not An Isolated Event
I wish I could tell you that this was an isolated event, but it isn’t.
Anna and Alex Nikolayev, the parents of 5-month-old Sammy, “were shocked when police showed up to take away their infant boy after they told a doctor they wanted a second opinion. Caught on camera, the footage shows police entering the California home of Anna and Alex Nikolayev and asking Anna to hand over the baby.” (source)
“I’m going to grab your baby and don’t resist and don’t fight me, okay?” one of the officers told Anna. Two months later a judge returned the boy and dismissed the case.
A woman who would not consent to a “safety plan” for her newborn baby without consulting her lawyer was ejected from the hospital and told she could return every three hours to nurse her baby. (source 1, source 2)
According to Jim Navarro, CPS threatened and intimidated his family into accepting cancer treatments they didn’t want for their son, blocked their access to the most promising therapy available, and then shrugged their shoulders when a child dies from chemotherapy toxicity? He made a documentary about their experience.
Why The Pelletier’s Case Should Matter To Every Parent
“When the people fear the government there is tyranny, when the government fears the people there is liberty.”
― Thomas Jefferson
Mama’s, we now have a situation in which normal, reasonable parents fear taking their children to healthcare providers. On the flipside, they also fear NOT taking them, because if they are ever accused of neglect they won’t have an established record of care.
Do we really want doctors and state organizations have this much power in our lives?
UPDATE 3/1/14: Several foster homes that DCF has tried to place Justina in have refused to take her for fear of protest rallies on their doorstep. DCF is now indicating that they plan to return Justina to her family. It hasn’t happened yet, but several sources are reporting that the public outcry on behalf of the Pelletiers is turning the tide for their case.
After watching helplessly as DCF was awarded permanent custody of their daughter in March, the Pelletiers are celebrating a complete 180 in Justina’s case. After a video plea from Justina went viral this month, a Boston judge has ordered DCF to return Justina to her parents. (source)
After 16 months of struggle, Justina is going home tomorrow. Thank you all for your support!
All photos via A Miracle For Justina On Facebook