I have been picking up bits and pieces of this story during the past few weeks, and each time I read about it I grow angrier.
Mitochondrial disease is not well-known by most of us. The disease affects the part of the human cell that functions as an energy factory. The first time that I even became aware of it was a few years ago when the enormously talented Major League Baseball player Rocco Baldelli* had to spend several years trying to resurrect his promising professional baseball career in spite of his affliction with the disorder. It eventually proved to be too great an obstacle for him to continue playing at that level.
Justina Pelletier had been diagnosed with the same disorder and had been receiving treatment for it. Her sister also has the same condition. At one point, she came down with a case of influenza and was brought to another hospital. She was (very) briefly reviewed by a Neurologist who, apparently in a quite cavalier manner, decided that the problem was psychological. When her parents insisted that she be allowed to continue with the medications for the original diagnosis, things got ugly - very ugly.
I don't know if the Neurologist has good friends in the hospital administration or not, but what has followed the dispute is a prime example of a bureaucratic and Social Services employees both working in collusion and running amok. The parents lost custody of their own child - over one year ago, for working to secure what they and other doctors believe are necessary treatments, no one seems to be willing to allow evidence that runs contrary to what the Neurologist said, and a judge even placed a gag order on the girl's father - who is now, understandably, unilaterally dispensing with the judge's interdict to tell the story of the nightmare that his family is enduring.
To me, this appears to be an event cascade. A host of poor and high-handed decisions were made early on, and everything that occurred after that have been nothing more than feverish attempts to protect the bad moves on the part of the Neurologist, hospital administration, Social Service employees, and the judge that is tyrannically yet ineptly handling this case.
Imagine that you lost custody of your on child for daring to work to ensure that he or she gets treatments for a disorder that was both diagnosed by a physician and also afflicts an immediate family member. Now think about that loss of custody spanning an entire year of the child's life with no end in sight.
"The last time Lou Pelletier spoke with his 15-year-old daughter was Feb. 14 — Valentine’s Day. For this father of four, though, the day held a different meaning for his youngest valentine: It marked one year since she was taken and placed in a psychiatric ward against her parents’ will.
“We need help,” Lou Pelletier told TheBlaze in an exclusive interview, explaining why he made the decision to break a judge’s gag order and talk about the situation.
“I’m trying to save my daughter’s life,” he said.
“While still being able to live,” Jessica, one of Justina’s older sisters, added.
For more than a year, Justina Pelletier has been the center of a battle between her parents, theMassachusetts Department of Children and Families and Boston Children’s Hospital, and two controversial medical diagnoses. After her family began speaking out last November about their fight against these major institutions in court, they were placed under a gag order.
Beyond little snippets given outside of court on the many hearings they’ve had, little has been heard from the parents who believe their daughter has mitochondrial disease and the medical facility that says she doesn’t, saying it’s a psychosomatic disorder instead.
But now the Pelletiers are speaking out.
When the Pelletiers brought Justina to a Connecticut hospital in February 2013, she was suffering from the flu. As her sister Jessica explained it, people with mitochondrial disease are affected by illnesses, like the flu, in a more pronounced way.
Jessica, 25, is the second-oldest of the Pelletiers’ daughters and has mitochondrial disease herself. The disease can manifest itself in various ways, but at its root, results from a defect in the mitochondria, an organelle inside cells that produces energy. Jessica’s diagnosis was established medically through analysis of the cells of her muscle tissue.
In Justina’s case, a doctor evaluated her symptoms, considered her family history — mitochondrial disease can be inherited — and gave her a clinical diagnosis of the disorder. Under the care of physicians at Tufts Medical Center, Justina was treated for mitochondrial disease.
But when she got the flu and her parents were told she should be transferred to Boston Children’s Hospital, things changed.
As Lou Pelletier explained it, Justina was supposed to be transferred in an ambulance, for insurance purposes, to the Boston hospital, and brought through the emergency room but seen by a gastrointestinal doctor. Instead, upon arriving, he said she was stopped and evaluated by a neurologist, who, Pelletier said, didn’t look at her medical history or contact her other doctors. This doctor, according to Justina’s father, said he thought the illness was all in Justina’s head — that it was somatoform disorder.
The physicians at Boston Children’s Hospital disagreed with her diagnosis of mitochondrial disorder and wanted to take a different approach to her treatment. At first, Lou Pelletier said, “we were game to try a new approach.” But when the hospital laid out their plan to take Justina off all of her mitochondrial and pain medication, her parents balked.
That was Feb. 13, 2013. The next day — Valentine’s Day 2013 — Justina’s parents went to Boston Children’s Hospital with a couple of advocates intending to have her discharged and brought to Tufts. Instead, they were met with security guards and served a 51A, a report of alleged physical or emotional abuse.
Lou said when he saw security showing up, he called 911, thinking that things were not about to go in their favor.
“I told them ‘my daughter is about to be kidnapped by Boston Children’s Hospital,’” he said.
The Pelletiers were accused of overmedicalizing their daughter.............
Lou Pelletier told TheBlaze he used to play “20 questions” on the phone to learn from Justina what was going on in the psych ward on the days they were scheduled to call. Justina also used to sneak little notes to her family in cards she wrote them.
Jessica Pelletier demonstrated how she would fold a flap in cards and write messages in small handwriting underneath. Lou Pelletier said if Justina got caught doing this “she would get tortured,” which he said the hospital called “behavioral modification.”
“That’s what Kim Jong Il’s doing in North Korea, behavior modification. … No, no, no, no. It’s torture,” he said.
The Pelletiers don’t get cards anymore. All they get from Justina now are 20 minutes on the phone every Tuesday, one-hour visits each Friday, and her bracelets, which show her preferences for the colors blue and green. Both Lou and Jessica Pelletier sported several of Justina’s beaded or artistically twisted rubber band bracelets on their wrists.
After several court dates, Justina was moved from Boston Children’s Hospital to another facility in Massachusetts. At the time, Lou Pelletier said “justice maybe prevailed.” But in the hearing following this decision two weeks later, things seemed more grim from the Pelletiers’ perspective. Lou Pelletier said it is not a medical facility. He said it’s a temporary place where she is being held until her treatment going forward can be agreed upon in court........
Financially, they’re trying to make ends meet with expensive legal fees. The Pelletiers have aPayPal account for those wishing to donate to her family’s cause.
If the decisions regarding Justina’s care are returned to her parents, Lou thinks she needs total rehabilitation, saying that he worries her current state could be “irreversible.”
“She needs physical therapy. She needs to be back on the vitamin cocktail. She needs to be treated for the goddamn diagnosis she had from the beginning,” Lou said. ”I need to save my daughter. If we don’t do something, she is going to die.”