15-year-old Justina Pelletier of West Hartford, Connecticut has been in the hospital for nine months. Some years ago, she was diagnosed with a mitochondrial disorder, a disease resulting from inherited genetic mutations that can result in muscle weakness, among other complications. In February, her parents took her to Boston Children’s Hospital as she had come down with the flu.
But once there, doctors disputed her diagnosis of a mitochondrial disorder. The hospital diagnosed Justina instead with a somatoform disorder, a psychiatric condition in which a person thinks they have physical symptoms such as pain which are “not explained by a general medical condition.”
The dispute about Justina’s diagnosis has led to a month-long custody fight between the hospital and her family, who have been accused of, in effect, giving her too much medical treatment for a disorder that she does not have.
Who’s right? Parents who’ve been caring for a child all her life or a hospital’s medical staff?
Or could it be possible that Justina has had a mental health disorder all along and that her family has been seeking to explain this as a medical, physiological disease?
Parents and Hospital Disagree About Justina’s Diagnosis
Saying that the Pelletiers had been giving their daughter unnecessary medication and treatments including “complex surgeries” for a mitochondrial disorder that she did not have, the Boston Children’s Hospital contacted the Department of Children and Families shortly after Justina was admitted to the hospital in February. As Fox News reports, her parents, Lou and Linda Pelletier ,were “escorted out of the hospital by security, and within four days, they lost custody of Justina.”
The Pelletiers are now fighting to regain custody of their own daughter whose health has deteriorated because the hospital has stopped the treatment that her other doctors had prescribed.
Justina has now been placed in a locked psychiatric ward and doctors have taken her off all the medications she had been receiving for the mitochondrial disorder. Her phone, iPad, music and a “collection of pink fluffy toys” have been taken from her. Her family is now only allowed to see her for one hour a week and the 20 minute calls home that she is allowed are monitored; she has reportedly been sneaking notes to them in origami flowers, as her older sister, Jennifer (who has also been diagnosed with a mitochondrial disorder), says in the Daily Mail. While her family describes a teen who loved to figure skate and go on walks with their dog, Justina is reportedly now so weak that she has to use a wheelchair.
It goes without saying that the Pelletiers and Justina’s three older sisters are desperate to get her back. The Pelletiers say that they have been accused of “overmedicalizing” Justina though “every procedure and prescription” for her was “sanctioned by doctors” including Dr. Mark Korson, a specialist in pediatrics, genetics and metabolism at Tufts University Hospital. While the university is not allowing Dr. Korson to speak to the media, the Pelletiers showed Fox News an email in which he wrote in reference the Boston Children’s Hospital:
“I am dismayed. … It feels like Justina’s treatment team is out to prove the diagnosis at all costs. … The team has demanded that Justina be removed from the home. … This represents the most severe and intrusive intervention a patient can undergo … for a clinical hunch.”
Dean Hokanson, a Connecticut clinical psychologist who has worked with Justina for the past five years and has testified on behalf of her family in court proceedings, comments that her family is “actually being accused of being too active in pursuing healthcare matters for their child.”
Mitochondrial Diseases and Misdiagnosis
As Dr. Amel Karaa, a physcian at Massachusetts General Hospital, says, a condition like mitochondrial disorder can often “lead to confusion for health care providers” and cites “ lot of social cases .. where the children were taken away from their parents by social services and the hospital because the medical team thought that the parents were causing this to their child.” Other parents been suspected of abusing their children, according to the Mito Action support group.
In the United States, mitochondrial disease affects one in every 4,000 children by the age of 10 in the United States and, according to the Cleveland Clinic, is “often misdiagnosed due to the fact many of the symptoms are synonymous with other, more common, diseases.” According to a 2007 study, somatoform disorders occur in about 0.2 to 2 percent in women and are more common in them than in men.
December 5 is the next court date for the Pelletiers to try to get their daughter back from the hospital; child welfare workers will also be present. Justina’s father says that his daughter has been in effect kidnapped. He and his wife just want her back home. At the very least, should her parents and sisters — who, regardless of her diagnosis, have been trying to do the right thing — not be able to see Justina more?
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