Justina Pelletier Retells Hospital Horror Story: Forced to Stay but Told Her Rare Disease Was All in Her Head

Justina Pelletier Retells Hospital Horror Story: Forced to Stay but Told Her Rare Disease Was All in Her Head

Justina Pelletier, the Connecticut teen who was taken from her parents by hospital staff 16 months ago, described her sobering ordeal for the first time to Fox News’ Mike Huckabee on Saturday.

In an emotional interview with her parents and sisters present, Justina said that no one should go through what happened to her due to the actions of the Massachusetts Department of Children and Families (DCF).

“I’m like, ‘Yeah, this should never happen again to anybody.’ To any kid or any person. They should never be put through what I’ve been put through,” Justina said on Huckabee Saturday evening. “And they were so mean and nasty to me and they were being mean and terrible to my family also. And no one should be put through that.”

As FoxNews.com reports, the 16 year-old who has been at the center of a custody battle between her parents and the state of Massachusetts, described the situation of not being allowed to see her family except for one hour of supervised visitation per week and only one permitted phone call with them once per week for 20 minutes.

“It was really hard because we couldn’t talk about things that we really wanted to talk about,” Justina said. “No one was on my side there. No one believed me there. Everyone told me I was faking.”

Justina, who returned home to West Hartford, Connecticut on June 18 following a lengthy court battle, was admitted to Boston Children’s Hospital in February of 2013 with the flu but ended up being taken from the custody of her parents and locked away in a psychiatric unit for 16 months due to a disagreement between two hospitals over her diagnosis.

The active teen who once enjoyed ice skating is now in a wheelchair, and her parents say they have no clue why they were stripped of custody of their daughter.

“I had days that I couldn’t function because I don’t know why they [Massachusetts Department of Children and Families] did this,” said Linda Pelletier about her family’s plight.

As the Daily Mail reports, three years ago, Justina was diagnosed with a rare genetic muscle wasting condition known as Mitochondrial Disease. Her 25 year-old sister Jessica also suffers from the condition.

“Experts claim one in every 2,000 children in the U.S. suffer from Mitochondrial Disease, which saps energy, causes intestine and organ problems and gets progressively worse with age,” reports the Daily Mail.

The disease, which can be either inherited or caused by mitochondrial toxins, is nevertheless difficult to diagnose and, according to support network Mito Action, parents have at times been suspected of child abuse and sufferers accused of somatization disorders or fabricating pain.

Regarding Somatoform Disorder, in 2011, an article abstract listed in the US National Library of Medicine National Institutes of Health stated the following:

Somatoform disorders among children and adolescents may cause impairment in educational and social functioning and generate a great deal of psychosocial distress. The diagnosis of such disorders is complex due to the fact that they may appear as medical conditions. Hence, most of somatoform patients do not seek psychiatric assistance. The common feature of somatoform disorders as described in DSM-IV-TR is the presence of physical symptoms suggesting an underlying medical condition that is either not found or does not account for the level of functional impairment.

The Pelletier sisters were both treated for the illness by Dr. Mark Korson at Tufts Medical Center in Boston. It was determined that Justina would need two surgeries to clear a blockage in her intestines and insert a port to allow her colon to be flushed daily with a saline solution. In addition, Justina was placed on multiple medications and seemed to be faring well.

In February of last year, however, when Korson was away, Justina came down with the flu and became dehydrated. Her parents admitted her to Boston’s Children’s Hospital on February 10, 2013. The very next day, when the parents went to visit her, they were met by a neurologist and a psychiatrist.

“They told me that Mitochondrial Disease did not exist,” said Justina’s father Lou Pelletier, a financial planner. “Instead, they said she had Somatoform Disorder, which is effectively a stress-related mental problem.”

“They said she had been misdiagnosed, overmedicated, and forced to undergo unnecessary procedures,” he continued. “It was as though they were accusing us of needlessly harming our daughter.”

Within three days, in a list of “guidelines” given to Justina’s mother, the hospital placed limitations on the family’s involvement with Justina and also ruled out second opinions.

Though Linda attempted to take Justina to Tufts for a scheduled appointment with her regular specialist, Massachusetts DCF workers were called in and, within one day, a judge ruled that Justina was in the custody of DCF and that she must stay at Boston Children’s Hospital.

“The place makes One Flew Over the Cuckoo’s Nest look like a Charlie Brown Peanuts Christmas special,” Justina’s father told the Daily Mail.

A hospital report written in April indicates that doctors removed Justina from many of her medications she was taking at the time of her admission:

Due to concerns regarding Justina’s regressive behavior changes around her family, the multiple medical procedures and care episodes she has been through … and both parents’ resistance towards recommended treatment plans for Justina … a child protection team was convened.

“All we ever did was follow our original doctor’s orders,” said Linda.

According to Justina’s father, his daughter’s original doctors were cut out of her treatment and the new team that convened to oversee her care specialized in Somatoform Disorder and had written papers and books on the topic.

“I truly believe she is being used as a guinea pig for medical experiments,” Lou Pelletier told the Daily Mail last November.

The Hartford Courant reports that Lou Pelletier said Justina has “no feeling at all below her hips” and is confined to a wheelchair. He added, however, that Dr. Korson is “optimistic” that Justina will return to normal with further physical therapy.