In February 2013, a 14-year-old girl named Justina Pelletier was “medically kidnapped,” according to her family, and kept for more than a year by authorities at Boston Children’s Hospital (BCH).
While at BCH, doctors allegedly rejected Pelletier’s then-diagnosis of mitochondrial disease, which she had received from a team of doctors at Tufts Medical Center, stopped providing her with medication for that disease, and diagnosed her instead with somatoform disorder.
According to the Mayo Clinic, mitochondrial disease “results from failure of mitochondria to function properly. This can lead to less energy, cell injury and cell death. The most common organs that may experience damage are the brain, heart, liver, muscles, kidneys and the endocrine system.” The mitochondria are “specialized compartments within your body’s cells that are responsible for creating most of the body’s energy.”
Justina’s parents, Lou and Linda Pelletier, are currently suing BCH for their daughter’s alleged medical kidnapping.
I recently spoke with Lou Pelletier about his family’s harrowing story.
Our experience with Justina wasn’t our first trip to the rodeo because my second oldest, Jessica, had already been diagnosed with mitochondrial disease. So, we already had a connection with the Tufts Medical Center in Boston. They literally saved Jessica’s life. She wasn’t able to eat. She was basically dying here in Hartford, Connecticut, and getting her to Tufts saved her life. It was there that they came up with the official diagnosis that she had mitochondrial disease.
It was Lou and Linda’s experience with Jessica and her diagnosis at Tufts that helped them realize what was happening with Justina, who started treatment for mitochondrial disease in September 2011.
On Sunday, February 10, 2013, Justina came down with a flu, which hits mitochondrial patients particularly hard, according to Pelletier.
So, we spoke to her chief doctor, the head of genetics at Tufts, who basically said that he wanted her to see her GI [gastrointestinal] doctor, but the GI doctor who’s the director there, and most of his team, left Tufts to go to Boston Children’s Hospital about a month before because of some grant to conduct research.
So, Justina goes by ambulance. She was supposed to go through the emergency room and get admitted to the GI floor. Unfortunately, in the emergency room, a young neurologist comes in, and without telling us, basically, they change the diagnosis and put her on the neurology floor.
Shortly after the new diagnosis, Pelletier says the doctors began taking Justina off her mitochondrial disease medication. About three days after arriving at BCH, however, Justina had still not been seen by her GI specialist.
Finally, late in the day Wednesday, they threw this piece of paper at my wife, called “Guidelines of Care” for Justina, which basically says – you can’t speak to any other doctors; we’re taking her off of her medications; we’re basically in charge of her now.
On February 14, Lou went to meet Linda at BCH to have Justina discharged because she had a previously standing appointment with her metabolic doctor at Tufts.
I went to the nursing station, introduced myself, and said that I was there to discharge my daughter Justina to take her to Tufts. They kind of hemmed and hawed. Then, as time was passing, I was starting to see security guards to the left, to the right, behind. This isn’t looking good. So, we actually ended up calling the Boston Police Department to say that we believed that Boston Children’s Hospital was about to kidnap our daughter.
According to Pelletier, the police arrived, and after some back and forth, claimed that it was “the hospital’s decision.”
It made no sense at all. So, now we’re taken into a room, and all of a sudden, the main two people, the neurologist and the psychologist, they’ve come up with this bogus diagnosis of a psychosomatic illness called somatoform – that it was all in Justina’s head.
The director of psychiatry at Boston Children’s is also the author of a medical textbook on pediatric somatoform, and the psychologist who diagnosed Justina had written four papers on somatoform.
So, because we weren’t following their protocol, they decided to do a 51A, report us to the Department of Children and Families (DCF), and take custody. We said we were following Tufts medical protocol. The next thing we know, we’re being escorted out of there by security; not allowed to say goodbye to our daughter. We were told we had to show up at the DCF office in Roxbury, Massachusetts.”
After “scrambling to find an attorney,” the Pelletiers appeared in court the very next day, at which point the judge reportedly stated that proceedings would begin one week later.
They have what’s called a 72-hour-hearing, which took almost a month and a half. Then after that month and a half, despite the overwhelming evidence, all the witnesses – doctors from Tufts, the psychologist that she was dealing with in Connecticut for education, who knew her, who said Justina doesn’t have any type of psychosomatic illness – the judge, without putting anything in writing, just rubber-stamped it and gave temporary custody to the State of Massachusetts.
Pelletier says that this particular sequence of events ended in March of 2013. Justina wouldn’t be released back into her family’s custody for another 15 months.
After “losing round one in court,” the Pelletiers appealed. It was around this time that a local Fox affiliate was planning to run a story on the alleged medical kidnapping of Justina. Days before the story, the network released a few short promos, which prompted attorneys for BCH to “file a complaint against the television station,” says Pelletier.
So they pulled the rest of their promos, and then I’m told to appear in court Monday at 2 p.m. I find this out at noon on Monday. I have to jump in the car and drive two hours to Boston to appear in court.
At the hearing, the local Fox station allegedly said that the court couldn’t stop them from running their story.
Then during a sidebar – never written down, never said out loud – a sidebar with our attorney and the DCF attorneys, the judge said that he was placing a gag order on us, meaning we couldn’t talk about the story to any press. My attorney tells me after we leave what went on.
After the television station ran the piece, Justina’s story “started getting legs.” According to Pelletier, it was at this point that multiple outlets picked up on the story, and were asking to speak with the family, but he had to decline due to the gag order.
Approximately three months later, in February 2014, Pelletier decided to speak out in defiance of the order.
Our case was just dying on the vine. My daughter’s health was deteriorating and I just said, “I don’t care anymore. If they want to put me in jail, they can put me in jail.”
Despite some apprehension from the family about what breaking the gag order might do, as well as advice from his attorney and other legal experts not to break the order, Pelletier spoke out, first with Glenn Beck of The Blaze, then with Fox News’ Megyn Kelly.
The next thing you know, the gag order kind of just disappears. But after that, they changed the custody status from temporary for the state of Massachusetts to permanent for the State of Massachusetts.
Following his appearances with Beck and Kelly, other media opportunities rolled in, and in short order, one Reverend Pat Mahoney joined the cause.
He kind of came along as our spokesperson, and he’s probably is one of the biggest factors in helping bring this to light. He’s the one who put a microphone in front of Governor Deval Patrick, who had the power to stop this.
The situation then became a political one. Pelletier went to D.C. and met with various Republican politicians, including Senator Marco Rubio (R-FL), and then-Rep. Michele Bachmann (R-MN).
They actually ended up introducing a “Justina’s Law” bill that was cosponsored by two Democrats and two Republicans – which at some point, when the dust settles, I need to go back to Washington to kind of be the whip to get it going again – basically to stop what happened to Justina from happening ever again.
During her time at the hospital, including when she was in Bader 5, the psychiatric ward of BCH, Justina claims that she was abused.
She would send messages to her family, hidden in small writing or in origami, saying “they’re torturing me,” or “they’re hurting me,” says Pelletier. After the Fox affiliate covered these messages, however, the hospital clamped down, according to Pelletier, which was a deeply frustrating thing for the family, especially in light of the abuse claims made by Justina.
Visits were also allegedly restricted quite severely.
On Mother’s Day, we weren’t allowed to see her. Even though other parents were seeing their kids on holidays, Justina was not. On her birthday, a number of people had sent gifts to Justina through the gift shop. Two weeks after, a couple of the people who sent gifts wanted to know if Justina liked what she got. So they asked her, and she says she didn’t get anything.
Pelletier claims that the gifts were stowed away in a closet.
From April 2013 to January 2014, Justina was in Bader 5. She was then transferred to a place called Wayside, where visitation was still limited to an offsite location.
Even there, she was treated differently. Other parents were seeing their kids and they were given passes and everything else – not Justina. In fact, we couldn’t even see her there. DCF would come, take a van, and drive her to a DCF facility, and we’d have to see her at that DCF facility. And then, during our visits, there’d be guards and DCF people in the room. For the entire time, we were never allowed to have a private conversation with her [in person or over the phone]. Everything was being observed.
And if they believed we violated something from one of these calls, they would stop future calls and we’d have to beg and plead to get them to start up again. Everything they did was so disgusting in so many ways.
The damage done to her, as strong as she is – she’s severely damaged. It damaged her physically and it damaged her psychologically.
Pelletier speculates that increased media pressure led to Justina being transferred from Wayside to another facility, the Susan Wayne Center for Excellence, in April 2014. Despite the transfer to the new facility, which is located in Connecticut, Justina remained under the purview of the Massachusetts Department of Children and Family, according to Pelletier.
But we knew the pressure was on. On May 23, 2014, which was then her second birthday in captivity, they actually had a birthday party for her at the facility, which they paid for. That same day, radio host Jeff Kuhner held a rally in front of the capitol, and there were thousands.
I think that rally was like the final straw for Governor Deval Patrick, as well as the Health and Human Services Secretary of Massachusetts – which oversees DCF. Because several weeks later, with no restrictions, June 17th, Justina gets the letter saying she’s being released with no strings attached.
Prior to Justina’s release, a man named Martin Gottesfeld launched a DDoS campaign against Boston Children’s Hospital. The hacktivist claims he acted to bring awareness to Justina’s alleged medical kidnapping and abuse. To read more about the Gottesfeld case, click here.
Regarding Gottesfeld’s potential role in motivating the DCF to release Justina back into her parents’ custody, Pelletier said:
Honestly, I have no idea. I can’t quantify anything. I’m sure they weren’t happy with what he was doing. So, ultimately, did it help? I would think it had to do something. It had to be part of the public campaign that we were doing all over the radio and television. That, and whatever he was doing behind the scenes. I’m sure it had to have done something.
It’s been four years since Justina’s release, and although her life is better than it was while in state custody, the trek back to normal has been difficult, says Pelletier.
From just a living standpoint, she’s doing physical therapy, occupational therapy. She does horseback riding, and she’s in summer school right now 8:30 to 12:30, Monday through Thursday.
She had so much of her life ripped away from her that she’s just trying to recapture. We’re trying to keep her in school a year longer, and there’s so much stuff going on. There’s all these little skirmishes that suck the life from you.
And then, the big elephant in the room is the litigation we have against Boston Children’s Hospital. As of now, our court date looks like it’s in January of 2020. So, it’s a slow, tedious grind.
The Pelletiers are suing Boston Children’s Hospital for “medical malpractice and civil rights violations.” While a financial settlement would help, “there’s damage that’s irreversible.” The ultimate goal, Pelletier notes, is to “stop hospitals, the system, from abusing their power – because what happened to Justina is still happening across the country.”
Ultimately, I’d like to see a law passed that if people do this again, there will be consequences. Because from what I understand, no matter what happens with the case, the medical authorities that did this to her – who took this Hippocratic Oath to do no harm, but who did harm anyway – they’re gonna be practicing medicine when all is said and done.
Meanwhile, people like the Pelletiers have to deal with the fallout.
And that’s the problem with the whole system. DCF comes in, and you’re fighting the state, which has unlimited pockets. Yet you have to have private attorneys that you’re paying out of your own pocket. In our case, we’re fighting both DCF and Boston Children’s Hospital – which is Harvard, the wealthiest academic institution in the land – and they know that.
This David and Goliath dynamic is “why so many people are fed up,” according to Pelletier.
When people feel the government is openly abusing its power – in this case, Boston Children’s Hospital. We understand there are bad parents and there’s bad stuff out there – but when you’re guilty until proven innocent, something has to change.
The Pelletier family was apparently much closer to losing their daughter than many people realize.
To this day, it just shakes me to the bone that if all the pieces didn’t finally fall the way they did, she would have been sent off to foster care, adoption, whatever.
Pelletier frequently receives calls and emails from parents who allege that their children have also been medically kidnapped. While he can offer these people some guidance regarding how to find advocates and gain media attention, the system appears to be stacked against them.
I hope that when all is said and done, something good can come from what we did. That she didn’t go through this for nothing. She was a survivor.
Pelletier says that this should be a bipartisan issue in Washington; that “instead of throwing darts at each other, maybe politicians should focus on protecting the rights of parents and children that are being trampled on.”
Maybe we can make sure that hospitals – which do good for the most part – do a little bit more good, and stop doing some of this bad stuff. We shouldn’t be letting this happen.
I see the heartbreak that some of these families are going through. We lived it. We’ve become kind of a lightning rod for people to reach out to because they’re desperate. They don’t know what to do.
Hopefully, when all is said and done, I can be more of a voice. Again, take something bad that happened and try to make it better.
The Daily Wire would like to thank Lou Pelletier for speaking with us about this issue, and telling his daughter’s story.