U.S
Parents fight for custody of Justina Pelletier after Mass.
hospital locks her in psych ward
A number of forces are fighting over the care of Connecticut
teen Justina Pelletier. Parents Lou and Linda Pelletier agree with doctors at
Tufts Medical Center who claim Justina has mitochondrial disease. But Boston
Children's Hospital diagnosed Justina with a mental illness and accused the
Pelletiers of over-medicating their child. The state of Massachusetts has
assumed custody of the teen while the battle rages on.
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BY CAROL KURUVILLA / NEW YORK DAILY NEWS
TUESDAY, FEBRUARY 11, 2014, 2:24 PM
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Advocates are fighting for Connecticut teenager Justina
Pelletier (left). She was was placed in state custody in a psychiatric ward at
Boston Children's Hospital for nearly a year after they diagnosed her with
Somatoform Disorder.
A MIRACLE FOR JUSTINA/VIA FACEBOOK
Parents Lou and Linda Pelletier claim their daughter hasn’t
been receiving proper education or treatment after she was placed under the
custody of the state of Massachusetts.
One year after Justina Pelletier was locked into a
psychiatric ward at Boston Children’s Hospital, doctors, lawyers, and family
members are still struggling to answer the question—is this teenager really in
pain?
Doctors at Tufts Medical Center diagnosed Justina Pelletier
with mitochondrial disease, a genetic disorder that affects how cells produce
energy and can wreak havoc on nearly all of the body’s life-sustaining systems.
But on Feb. 10, 2013, another group of doctors at Boston Children’s Hospital
decided that the 15-year-old’s disease was psychosomatic—which meant that
Pelletier’s problems were caused by a mental illness and not by physical
ailments. When her parents attempted to take Pelletier back for treatment at
Tufts, Boston Children’s called in the cops.
The young girl was then thrown into a custody and medical
battle that has been raging for more than a year. Justina is still under
custody of the state of Massachusetts, but her parents haven't stopped fighting
to get her back.
"We are David, not against Goliath, but against two Goliaths—
Boston Children's Hospital and the State of Massachusetts," dad Lou
Pelletier told ABCNews.com. "To me it's a hopeless cause and the only way
to win is in the court of public opinion."
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Justina was placed in a state psychiatric ward for nearly a
year. In January, she was transferred to a temporary residential program in
Framingham while the court battles continue. The next hearing has been
scheduled for Feb. 13. In the meantime, Judge Joseph Johnston has placed a gag
order on all parties involved in the trials.
Justina’s parents have only been allowed supervised visits
with their daughter, which only last for one hour every week. They say her
condition deteriorated during her time at the psych ward.
Justina was was placed in state custody in a psychiatric
ward at Boston Children's Hospital for nearly a year after the hospital
diagnosed her with Somatoform Disorder.
A MIRACLE FOR JUSTINA/VIA FACEBOOK
Justina was was placed in state custody in a psychiatric
ward at Boston Children's Hospital for nearly a year after the hospital
diagnosed her with Somatoform Disorder.
"She is going off a cliff," Pelletier said of his
daughter, who is now confined to a wheelchair. "She looks awful and is
pale and her hair is falling out. Her gums are receding and she has no body
strength."
Until her medical troubles started, Justina was a normal
young girl. She loved figure skating and her family, who live in West Hartford,
Conn. Justina’s older sister Jessica was diagnosed with mitochondrial disease
by Dr. Mark Korson, chief of metabolism at Tufts. When Justina started feeling
sick in 2010, her parents took her to Tufts for an evaluation. She eventually
came under the care of Korson, who diagnosed her with the same disease as her
sister, then treated her with a “vitamin cocktail” and a number of other
prescription medicines.
Her condition seemed to be looking up until February 2013,
when she came down with the flu. Korson recommended that the family take the
girl to a colleague at Boston Children’s Hospital.
Justina was taken by ambulance to Boston Children’s, where a
young emergency room doctor told the family that he “didn’t believe” in
mitochondrial disease, ABC reports. A medical team at the hospital came up with
a new treatment plan, which Lou Pelletier says was created without input from
doctors from Tufts.
The new plan stated that Justina’s "medication regimen
will be simplified with a gradual reduction of medications to a small set of
essential, non-detrimental, modestly dosed medication with limited side
effects."
The family refused to sign this new plan and attempted to
check Justina out of Boston Children's on Feb. 14, 2013. The hospital responded
by accusing the parents of child abuse for over-medicating their daughter and
refusing to give her access to mental health therapy.
Last January, Justina was competing in ice-skating
competitions. Just a year later, the teen is confined to a wheelchair.
A MIRACLE FOR JUSTINA/VIA FACEBOOK
Last January, Justina was competing in ice-skating
competitions. Just a year later, the teen is confined to a wheelchair.
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IS 'IMPROVING'
The state then assumed custody of the girl. The Pelletier’s
say they are “frustrated” about the fact that they are no longer allowed to
make medical decisions for their daughter.
“I have a right as a U.S. citizen to take my daughter to
what doctor I want to, and it’s been taken away,” Linda Pelletier told Fox.
Boston Children’s Hospital released a statement defending
their doctors’ actions.
“We are proud of their work and positive impact on the
patient," the statement read. “[O]ur clinicians are particularly
distressed that the inaccuracies surrounding this case have caused undo concern
for the many children and their families with mitochondrial disorders in our
care. Misleading reports suggesting that the hospital holds patients in its
inpatient psychiatric unit do not recognize the role of DCF as the legal
guardian or the challenges inherent in finding appropriate lower acuity
facilities for certain patients.”
RELATED: JAHI MCMATH, BRAIN-DEAD TEEN, RELEASED FROM
HOSPITAL
But Justina’s parents say they were caught between the two
methods of treating their daughter’s medical symptoms. And they insist that
they never meant her harm.
Justina Pelletier is a 15-year-old from West Hartford, Conn.
A MIRACLE FOR JUSTINA/VIA FACEBOOK
Justina Pelletier is a 15-year-old from West Hartford, Conn.
"Every procedure she had done was not pushed by us, but
by the medical community. Insurance never would have covered it if it were not
medically necessary,” Lou said.
Advocates for Justina have started campaigns to help bring
Justina home. Diane O’Leary, executive director of The Coalition for Diagnostic
Rights, said that it is possible that Justina’s medical issues stem from a
combination of physical and mental symptoms.
"Doctors are absurdly reckless when they exclude a
medical investigation in favor of a vague somatoform diagnosis. It's always a
guess," she said. "This is a battleground where doctors and patients
are fighting for authority."
Despite the gag order, Lou Pelletier is continuing to speak
up for his daughter. He says that his daughter has suffered greatly after
doctors cut her off from the medicines she was taking with Korson. He also
claims that she hasn’t been getting a good education.
And Justina has reportedly snuck notes to her family saying
that she is constantly in pain.
"The system has failed," Lou said. "I am
battling the medical world that thinks it knows everything."
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