'This should never happen again': Teen held against her will by hospital for 16 months describes her ordeal after finally being released

By Daily Mail Reporter and Annette Witheridge

Published: 09:58 EDT, 29 June 2014 | Updated: 21:10 EDT, 29 June 2014

Justina Pelletier, the Connecticut teenager 'kidnapped' by hospital staff 16 months ago, has described her traumatic ordeal in her first interview since her release.

The 16-year-old was admitted to Boston Children's Hospital in February 2013 with the flu but was locked away in a psychiatric unit until this month after two hospitals clashed over her diagnosis.

'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 told Fox News' Mike Huckabee on Saturday.

'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.'

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New beginnings: Justina Pelletier, 16, was held against her will in hospital for 16 months because two hospitals clashed over her diagnosis. She is finally back at home

Speaking out: Justina Pelletier, 16, told Fox News' Mike Huckabee (right) that no child should go through the ordeal she suffered at the hands of the Massachusetts Department of Children and Families

Supportive family: Justina Pelletier (second from right) was joined by her parents Lou and Linda, and her three sisters, on Mike Huckabee's show. The Pelletiers stuck by the young girl through her horrible ordeal

A mother's heartbreak: Justina Pelletier's (right) mother Linda Pelletier (left) said she was 'so worried every night' while her daughter was in hospital

Justina revealed how she only one hour and 20 minutes of supervised contact with her parents a week (one hour in person and 20 minutes on the phone).

'It was really hard because we couldn't talk about things that we really wanted to talk to about,' Justina said.

'No-one was on my side there. No one believed me there. Everyone told me I was faking.'

Everything sacred to a teenager - phone, iPad, music and collection of pink fluffy toys - was taken away from her and she was forced to share a unit with sex abuse victims and self harmers.

The vibrant teen used to love to ice skate, but now uses a wheelchair.

Her mother Linda Pelletier told FOX News she doesn't understand why the Massachusetts Department of Children and Families (MDCF) stripped her of custody of her daughter.

'The worst thing I went through was I was so worried every night, all day long, not knowing what they were doing to her because I could not call, I could not get an update,' she said.

'I had days that I couldn't function because I don't know why they (MDCF) did this.'

Justina was returned to her family about two weeks ago after a lengthy court battle.

Freed at last: Justina Pelletier is pictured being driven home earlier this month after being kept against her will in hospital for 16 months

A winning smile: Justina Pelletier is driven home by her mother after her ordeal

Rapid decline: Justina is pictured left, in 2012, and right, while she was at Boston Children's Hospital

Three years ago Justina was diagnosed with the rare genetic muscle wasting condition Mitochondrial Disease. Her 25-year-old sister Jessica also suffers from it.

Both girls were treated by specialist Dr Mark Korson, at Tufts Medical Center in Boston, a two-and-a-half-hour drive from their home in West Hartford, Connecticut.

Justina needed two surgeries to clear a blockage in her intestines and fit a port, so that her colon could be flushed out daily with a saline solution. She was put on a cocktail of drugs and appeared to be responding well.

Then in February last year she went down with flu and became dehydrated. Dr Korson was away, and the family took Justina to Boston's Children's Hospital, where she was admitted on February 10.

Justina was admitted on February 10. The next day, her parents went to visit and were confronted by a neurologist and psychiatrist.

'Snatched': Lou and Linda Pelletier were accused of overmedicating their daughter and didn't agree with the diagnosis given by Boston Children's Hospital. All they have ever done is follow the advice of Justina's regular doctors at Tufts, they say. 'We don't know what we have done wrong', Linda sobbed to MailOnline

Putting on a brave face: Lou and Linda were only allowed to visit their daughter once a week for an hour

'They told me that Mitochondrial Disease did not exist,' says Lou, 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. It was as though they were accusing us of needlessly harming our daughter.'

Three days later staff handed Justina’s mother Linda a list of 'guidelines' for her care that included 'strict limitations' on the family’s involvement and a clause ruling out second opinions.

When Linda objected – and tried to take Justina off to nearby Tufts for a pre-arranged appointment with her regular specialist - child welfare workers were called in.

Within 24 hours, a judge ruled Justina had to stay at Boston Children’s Hospital and the Massachusetts Department of Children and Families was effectively given custody. The family fought to get her back since then.

Her devastated father, Lou, from West Hartford, Connecticut, told MailOnline: 'The place makes One Flew Over the Cuckoo’s Nest look like a Charlie Brown Peanuts Christmas special.'

A report, written in April this year by one of the hospital's staff states how doctors took Justina off many of the medications she was taking at the time she was admitted.

'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,' it read.

'All we ever did was follow our original doctor’s orders,' says 56-year-old Linda.

MailOnline has examined documents from Tufts, including a list of prescribed medications. And Lou described at length how he followed instructions to the letter on how to 'flush out' Justina’s colon.

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.

Vibrant: Despite having treatment for mitochondrial Disease the family say Justina was healthy and enjoyed a normal childhood before the dramatic intervention of doctors at Boston Children's Hospital

Secret messages: Justina (pictured with sister Julia, 19) was forced to smuggle out messages to her family in origami. One read: 'I know you trust in me. Don't forget it. I love you more than everything in the world'

The disease is hard to diagnose and, according to the Mito Action support group, parents have been suspected of child abuse and sufferers accused of somatization disorders or fabricating pain.

Meanwhile, Somatoform Disorder is considered to be anxiety-related with sufferers feeling real pain that cannot be medically explained. Between 0.2 and 2 per cent of females and 0.2 per cent of men in the U.S. have been diagnosed as sufferers.

Justina’s family insisted she did not have Somatoform Disorder symptoms when she was admitted to Boston Children’s Hospital.

Older sister Jennifer, an ice skating teacher who also competes across the U.S., claims staff appeared to be creating the symptoms to fit the diagnosis.

Jennifer spoke to MailOnline in November last year.

'We’ve been trying to keep her spirits up,' she explained. 'Justina has been planning her homecoming party, she wants a DJ and karaoke and lots of decorations around the pool.'

Justina couldn't see her family without a welfare supervisor or hospital staff member in the room. Jennifer said that they had to have whispered conversations about her future.

'Justina says psychiatric staff have told her she is never coming home. They have apparently told her not to plan any homecoming parties because she isn't going home. I don't know exactly when or how many times she has been told this but Justina believes she is going to die in there.

'I don’t know what they are trying to do to her but they have destroyed her hope and trust. All we have ever wanted for Justina is for her to get better but she is getting worse.

'They say adolescents suffering from Somatoform are depressed, listless and uninterested in school or activities. She used to love school, she spent hours at the ice skating rink with her friends and hiking with her dog.

'She is certainly listless and depressed now – it is like they have created those symptoms to suit their own ends. Once when I visited, I offered to give Justina a pedicure. It was something we used to do all the time.

'When she took off her horrible scratchy hospital socks, her legs were swollen, her skin was a weird white color and she was stone cold. She cannot stand now, she is too weak and has to use a wheelchair to move around.

'Justina believes she won’t be strong enough to make it. She makes origami flowers and writes little notes to us on them. It is the only way she can get messages to us. She is very frightened about what is happening to her.'

One heartbreaking message read: 'I know you trust in me. Don't forget it. I love you more than everything in the world. Justina'.

Strict limitations: The austere set of conditions set out for Justina's treatment that her parents were given that rules out any 'second opinion' of the diagnosis

Lou, a normally calm man who jokes about being the only male in a noisy household of women, can't but help get angry when he thinks about what his youngest daughter is going through.

'Who knows what lasting damage they have done to her mentally and physically,' he said in November last year. 'The hospital gets gazillions in grants for research. I truly believe she is being used as a guinea pig for medical experiments.

'Justina’s original doctors have been cut out of the loop. Her new team specializes in Somatoform Disorder. They have written papers and books on the subject.

'My baby daughter has been kidnapped.

'Somatoform sufferers apparently have unexplained, physical symptoms of pain. The disorder mimics other medical conditions. It is considered to be a mental problem and is treated with anti depressants.

'Justina is now in a lock-down facility with kids who have been sexually abused, who cut themselves and God only knows what else. They are in and out in a week. Justina has been there nine months.

'The place makes One Flew Over the Cuckoo’s Nest look like a Charlie Brown Peanuts Christmas special.

'We don’t even know what they are doing to her. No one will tell us about her treatment. They have kidnapped her, taken her off medications that worked and left her to suffer in pain.'

Lonely: Justina could only call her family twice a week - but the family say the calls were listened in to

Justina's mother said: 'Everything that is sacred to a teenage girl has been taken away from her. She is just lying alone in a bare room'

She was rarely allowed outside for fresh air and spends most of her time in a small room, off the main psychiatric ward, without even a television to occupy her time.

'Her phone and iPad were taken from her nine months ago, she cannot contact her friends, listen to music or watch her favorite TV shows,' says her 56-year-old mother. 'Everything that is sacred to a teenage girl has been taken away from her. She is just lying alone in a bare room.

'Four of her friends are on an "approved" telephone list and they can call occasionally but staff even listen in to those calls. It is like 1984 and Big Brother – she is constantly watched. If you ring the hospital, they say she is not there. It is like she has been disappeared.

'On her 15th birthday we were told we could take in a cake but not put candles on it. I am not quite sure what they thought we were going to do with the candles but they just come up with these crazy rules.

'Lots of her friends and relatives ordered helium balloons and other presents from the hospital gift shop to cheer her up on her birthday. They kept phoning me to see if I knew if Justina had received them.

'Ten days later, Justina was handed a pile of deflated balloons. They’d apparently been stuffed in a cupboard.'

State officials filed a motion this month agreeing that the teenager should be returned to her family.

'I'm really excited for everything to go back to normal. And it's a long road ahead, but it will definitely get there,' Justina told Fox News.