HARTFORD (CBS Connecticut) — Lou Pelletier has been embroiled in the custody battle for his daughter Justina against the Commonwealth of Massachusetts for over a year now. The 15-year old was checked in to Boston Children’s Hospital, only to receive a drastically different diagnosis for her medical condition than she previously received at Tufts Medical Center. Since then, Massachusetts Department of Children and Families has taken custody of the girl, leaving her family to fight to regain custody of their daughter and control of her medical care.
Pelletier described the history of this situation, and how it has escalated into a story gaining national attention, with Jim Vicevich.
“Her main doctor… one of the top Mitochondrial doctors in the country. if not the world, recommended [Boston Children’s Hospital] because of the flu and because of a previous surgery done at Tufts,” Pelletier recalled. “The doctor she wanted to see was Dr. Alex Flores, who was the former head of GI at Tufts. But the month earlier he and most of his GI team left Tufts to go to Boston Children’s Hospital. Thus, the nightmare began. We went on February 10th by ambulance on a snowy weekend, from Connecticut to Boston Children’s Hospital, where she was to be a direct admission to the GI floor. A very young neurologist came along and said ‘There’s no such thing as Mitochondrial disease.’ He didn’t come out and say there was something mental, he just said we’re going to try a different approach, which we went along with. We were game, we were trying to get our daughter better.”
“After a few days, they still hadn’t spoken to the doctor that sent her there, Dr. Mark Korson, and more importantly the doctor she came to see was not allowed to see her, Dr Alex Flores,” he continued. “On February 13th, they gave my wife– who was staying there with her– this paper called ‘The Guidelines of Care for Justina Pelletier,’ which violated just about every human and civil right you could think of– You were not allowed to speak to any other doctors, there would be no more diagnosing going on… this was all Boston Children’s Hospital.”
At this point, even a previously scheduled appointment for Justina at Tufts could not release her from Boston Children’s Hospital. “On February 14th, I went to discharge her because she had a prescheduled appointment at Tufts that day. I came up there to discharge her to take her to Tufts,” Pelletier said. “They called DCF saying we were risking her safety by not following Boston Children’s medical diagnosis, which was Somatoform, saying everything was in her head, which was mind boggling.”
“I think they already had their agenda made up, they saw this young lady come in there with a stomach issue, which is one of the easy targets they go after [and] we were from out of state. They called in DCF and we were escorted out of the hospital, given a no trespass, had to go to the DCF office in Roxbury,” he continued. “And the worst thing was, it’s 4 o’ clock in the afternoon on Thursday and we’re from Connecticut. The very next morning, February 15th Friday, we had to appear in court with an attorney. So we had to scramble to not only find an attorney but find one that was going to be available for that morning.”
Since then, there have been attorneys and Christian organizations who have come out in support of the Pelletiers’ situation, as well as Beau Berman from Fox Connecticut, who broke the story in late 2013. “As many people may not be aware, there was a large newspaper in Boston that came to us back in April, but sat on the story from April until December after Fox published it,” Pelletier recalled. “Glenn Beck asked me to appear on his TV and radio show, that’s what really helped spread the word. Many other media people started hearing about it, and getting an understanding of what transpired from February 10th until now, over a year later.”
Despite the support the Pelletiers have received in this struggle, as of now their daughter is still in the custody of Massachusetts DCF, placed in a residential program that Pelletier believes is not the right fit for his daughter and her condition. “She has been in a temporary psychiatric residential facility called Wayside in Framingham, MA, which was designed for people to stay there two weeks. And it’s non-medical, so they have no business dealing with anybody with medical conditions… She had been there at this point six or seven weeks,” he said. “When you see the before and after pictures of Justina, she was ice skating on January 23rd… less than two weeks later, she was at Boston Children’s, and now over a year later she is pretty much paralyzed below the hips by the damage caused by them, almost no body strength above, they violated her educational rights, and they violated all her religious rights. She was not allowed to celebrate Easter or Christmas, not allowed to talk to us on those days.”
Possibly the most troubling aspect of this case is that Pelletier asserts his family’s struggle is not unique. According to him, there are countless others embroiled in very similar situations, even if they are not gaining the same national audience. “We’ve become the rallying flag. Literally, thousands and thousands of people had the same thing happen to them. It happens every day,” he explained. There is another side to this issue, as well– if people are being admitted to psychiatric facilities incorrectly, individuals with a greater need to be there for treatment may be turned away due to limited space. “Every pediatric emergency room has five to ten people there with major psychiatric issues, but there’s no room,” Pelletier continued. “Yet they have people in those rooms that shouldn’t be there, because they don’t fit the qualifications to be in there, and the people that do need help can’t get in.”
There is another custody hearing scheduled on March 17th in Boston, and the Massachusetts Department of Children and Families said it was working to arrange the teen’s return to Connecticut. But Pelletier won’t rest until Justina is back in her family’s custody. “She is still at the Wayside facility,” he explained. “Massachusetts DCF is still in charge… they are now talking about having her go back in control of her Tufts doctor, basically admitting they were wrong. Yet while admitting they were wrong, they don’t want to release custody. At best they’re thinking of having her be transferred from Massachusetts DCF to Connecticut DCF. I’m furious, because we’ve done nothing wrong.”
As Pelletier and his family continue their fight for custody, they have launched a website called FreeJustina.com, which offers ways in which their supporters can help. “This has been David against Goliath,” Pelletier said of the year-long situation. “I’m just a little guy here, fighting Harvard and Boston Children’s and fighting Massachusetts DCF. Their pockets are a little deeper than mine.”