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, the Massachusetts 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 pointed out that he doesn’t see how having a congenital band removed, her tonsils taken out, procedures to help her have bowel movements — a reoccurring issue for Justina — and following doctor’s orders for prescriptions for mitochondrial disease can be considered overmedicalizing.
Justina was transferred to Boston Children’s Hospital’s Bader 5 psychiatric unit on April 9, 2013. There she was treated for somatoform disorder. According to a document from Boston Children’s given to the Pelletiers, Justina’s treatment included a “behavioral plan […] formulated with input from all relevant disciplines which will day schedule, feeding and functioning plans with a therapeutic approach.” Physical therapy was included as well.
Another measure on the “Guidelines for Care of Justina Pelletier” included that “no diagnostic tests and no new consultations are to be requested unless Justina develops a new or acute process as observed and assessed by the medical team.”
The Pelletier family isn’t necessarily alone in their experience with the hospital. After their case made national headlines, other families began speaking out about the hospital threatening to get DCF involved. Complaints that have been filed since against Bader 5 prompted the Massachusetts Department of Public Health to launch an investigation.
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.
“Now we go back the 24th, a week from today, and I want to have all my guns blazing. We’re not going to make it much more,” Lou Pelletier said.
“Our family,” Jessica Pelletier said, “I don’t know how we survived this long.”
And they’re not just talking about the “heartbreak” of Justina. The yearlong fight to bring the decisions regarding her medical care back to her parents has taken a toll on the Pelletier family.
Financially, they’re trying to make ends meet with expensive legal fees. The Pelletiers have a PayPal account connected to www.freejustina.com 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.”
On the Glenn Beck Program Monday night, Lou Pelletier said he and his wife, Linda, continue telling Justina to hang in there.
“I never thought of all my daughters that she would be my hero,” Lou said on TheBlaze TV, telling Beck that he has been amazed by his daughter’s strength, even as he has seen her condition deteriorate. “She needs to be this country’s hero.”