- Odd News
Like something out of a Kafka novel, Justina Pelletier has been 'disappeared'.
The 15-year-old was admitted to hospital nine months ago suffering from a bout of the flu and has been locked away in a stark psychiatric unit at Boston Children's Hospital ever since with sex abuse victims and children who have self-harmed themselves.
For her devastated parents and her three sisters, her plight is almost too heartbreaking to bear. Unable to contact her beloved family or friends, her every move is monitored.
Everything sacred to a teenager: her phone, iPad, music and collection of pink fluffy toys – has been taken away from her. She can only see her family for one hour a week and calls home are listened in on.
Rapid decline: Justina is pictured left, in 2012, and right, since she has been at Boston Children's Hospital
We miss you: Sitting on Justina's bed at her Connecticut home are her sisters: From left, Julia, Jennifer and Jessica. Jessica, far right, has been diagnosed as having the same Mitochondrial Disease that Justina was being treated for before she was 'kidnapped' after a visit to Boston Children's Hospital with a bout of the flu. Doctors there diagnosed her with a mental condition called Somatoform Disorder instead
Her family say Justina was a vibrant, ice-skating fanatic who loved hiking with her German Shepherd Roxie who she used to sleep with.
Now she is a shadow of her former self. Confined to a hard bed in a starkly furnished room, she can no longer walk unaided. And her family claim that staff have told her that she 'is never getting out'.
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.'
Boston Children's Hospital and the Department of Children and Families have refused to comment, citing a gag order imposed by the court.
Justina’s disturbing plight was first revealed last week. Few can grasp how the girl has been taken from her well-to-do, loving family on the apparent whim of doctors on the cutting edge of medical science.
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 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 are only allowed to visit their daughter once a week for an hour. They are appalled at the conditions she has to live in. Lou said it makes 'One Flew Over the Cuckoo’s Nest look like a Charlie Brown Peanuts Christmas special'
'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 has been fighting to get her back ever since.
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, who cries constantly as she tries to explain what happened.
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
Secret messages: Justina (pictured with sister Julia, 19) has been 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 insists 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 appear to be creating the symptoms to fit the diagnosis.
'We’ve been trying to keep her spirits up,' she explains. 'Justina has been planning her homecoming party, she wants a DJ and karaoke and lots of decorations around the pool.'
Justina can't see her family without a welfare supervisor or hospital staff member in the room. Jennifer says that they have had a 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 says. '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.'
Lou, who believes Massachusetts taxpayers will ultimately pick up the million dollar-plus medical costs for Justina’s care, added: 'We are only allowed one hour-long supervised visit with Justina a week. And they will only permit two family members per visit.
'Her mom and sisters want to see her but it means I haven’t been able to visit in weeks. I used to wait in the lobby but I’ve been told I can’t do that. Now I have to sit seething in the car outside.'
Depriving the family is one thing. But Justina herself doesn’t even have basic human comforts and the family can't understand how her life there benefits her or is part of her treatment.
Lonely: Justina can only call her family twice a week - but the family say the calls are listened in to. She can only have one visit a week for an hour too. Unlike any other 15-year-old she has no TV, cell phone or internet
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 is 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.'
Justina was diagnosed with mitochondrial disease several years ago, a genetic condition that affects muscle coordination and mobility.
The illness includes a group of neuromuscular diseases caused by damage to intracellular structures that produce energy.
There is no cure for the condition that is progressive and can cause death.
Symptoms can include weakness, intolerance for exercise, heart failure, dementia and rhythm disturbances.
Every year 1,000 to 4,000 children in the United states are born with a mitochondrial disease.
After being admitted to Boston Children's Hospital in February however doctors concluded the teenager was suffering from Somafotorm disorder, a psychological condition that causes sufferers to feel pain, although there is no physical cause for it.
Sufferers do not feign the physical symptoms they feel, rather they present themselves as the result of mental strain.
Doctors cannot identify the sources of patients' pain and instead prescribe anti-depressants.
Patients can become increasingly frustrated with the diagnosis as there is seemingly no explanation for their symptoms.
Experts estimate that between 0.2 and 2 per cent of females and less than 0.2. per cent of men in the US suffer from the condition.
The family’s biggest fear is that Justina will ultimately be placed in foster care.
'Justina doesn't think she will make it if she goes into foster care,' said sister Jennifer.
'No-one wants to help. I have contacted senators, congressmen, prosecutors and even the FBI and the police. It is all wheels-within-wheels, everyone has a connection to that hospital,' says 56-year-old Lou.
'We have tried to do things officially but we fear the Massachusetts Children and Families Department are going to take Justina away from us for ever. We’ve heard they have even been looking at foster homes for her.
'She doesn’t need foster parents, she has her own loving family here and we want her back. No social worker has been to visit us, they haven’t checked our home or spoken to Justina’s teachers.
'All we want is Justina back. We don’t even know what we are supposed to have done wrong. They say we overmedicated her and forced her to have unnecessary procedures. But all we ever did was follow her original doctors’ orders.
Campaign: Sister Jennifer has been helping her parents raise awareness of Justina's plight. She said: 'All we have ever wanted for Justina is for her to get better but she is getting worse'. Jennifer said Justina told her that staff have said she is 'never going home'
Roxie: Justina has been denied contact with family's German Shepherd Roxie - who the 15-year-old used to go hiking with and sleep with. The family fondly remember how Roxie used to howl when Justina played the piano
'We have all the paperwork to show everything was sanctioned by her original specialist Dr Mark Korson at Tufts Medical Center but he has been pushed aside so these other experts can present their rare mental disorder diagnosis.'
In one recent email to the family, Dr Korson wrote: 'I am dismayed…it feels like Justina’s treatment team is out to prove the diagnosis at all costs. This represents the most severe and intrusive intervention …for a clinical hunch', according to Fox CT.
A spokeswoman for Tufts Medical Center said: 'We are unable to speak publicly about Justina's case because of the Hippocratic code governing patient privacy. Dr Korson cannot talk about her case.'
Meanwhile, a spokeswoman for Boston Children’s Hospital patient relations department said: 'We are unable to discuss any patient’s personal or medical details.'
Asked if it was possible to talk to an expert on Somatoform, she referred MailOnline to the hospital’s website. And despite agreeing to pass on messages to Justina’s medical team, no one returned calls.
When MailOnline called back and asked to speak to Justina, a different woman in the patient relations department said: 'I am not able to put you through to anyone who may or may not be here. It would be in violation of the Hippocratic (privacy) code.'
The hospital's website states: 'Sometimes a child complains continually of a pain or physical disability for which a physician cannot find a physical cause or the cause found does not account for the level of impairment experienced by the child. The pain or disability, however, is very real to the child.
'As an example, a girl that develops an inability to walk that is unexplained by a medical condition, but is temporarily related to family conflicts. She is ‘converting’ a psychological stress into a physical condition.'
Christy Balcells, director of the Mito Action support group, told MailOnline: 'Justina’s family isn’t the first that this has happened to at Boston Children’s Hospital. I know of two other children that were removed to foster care. But Justina is the only one who has been made to live at the hospital.
'And in Justina’s case, the family was following the directions of their physicians, doing what they were told to do. But even if her family had been doing something to the child, a hospital is no place to live. It is horrible, the quality of life is just awful.
'If the doctors at Boston Children’s really thought Justina would be better off being removed from the care of her parents, they should have found her a foster home.
We want her back: The Pelletier family, from left, Jessica, parents Lou and Linda, Jennifer and Julia. Lou said: 'She doesn't need foster parents, she has her own loving family here. No social worker has been to visit us, they haven't checked our home or spoken to Justina's teachers'
Memories: Linda Pelletier points to art on the family's refrigerator drawn by Justina while she's been in hospital
'As a mother who has a child with Mitochondrial Disease, I know the stress a family goes through when a child is unwell with an unpredictable illness that when severe can cause death.
'Families are told by doctors there are things they can do to keep the child alive. So when someone else comes along and tries to change the plan,they become emotional and react out of fear.
'Some doctors say the child is making it up or the parents are harming the child. If that was the case with Justina, then I have to ask why after nine months in hospital isn’t she getting better?
'Mitochondrial Disease is relatively new, it was named in 1969 and like any disease there are varying levels. In extreme cases it causes seizures, organ failure and death. In others it is less severe.
'It is often misdiagnosed. It is not a chronic fatigue syndrome or an immunodeficiency disease. Some suffers have even been labeled autistic. One in every 2,000 children suffer from degrees of Mitochondrial Disease, it is actually more common then childhood cancers.
'We have seen a jump in the figures as diagnosis and technology gets better. But we are still a long way from finding a simple test that can accurately pinpoint it.
'It is not a black and white disease. Tufts and Boston Children’s Hospital both receive Harvard University backing and there is discord between the two. Tufts has said one thing, Boston Children’s another. And Justina and her family are caught in the middle.'
There is another custody hearing between family, hospital staff and child welfare workers on December 5.