Last November I shared the heartbreaking story of the Pelletier family.
They have a beautiful young teenage daughter who is diagnosed with mitochondrial disease by her doctors. They prescribed treatments with drugs and surgeries. With the prescribed treatments, she has been living the active and normal life of a 15 year old teenage girl. She was doing so well on the treatment for the mitochondrial disease that she was able to compete in ice skating competitions.
A year ago, Justina Pelletier caught the flu. Knowing her medical history, her parents took her to Boston Children’s Hospital to see a specialist. While at the hospital, a new team of doctors took over Justina’s case and subsequently came up with a different diagnosis than her previous doctor. They determined that Justina was suffering from samatoform disease, a form of mental illness which calls for an entirely different set of treatments. They ordered the girl to go off of all her medications.
Justina’s parents, Lou and Linda disagreed with the new doctors at Boston Children’s Hospital. That’s when the doctors accused her parents of creating the disorder by over medicalizing her. Hospital security quickly ushered the parents out of the hospital and four days later they were informed that they no longer had legal custody of their daughter.
Over past year, Lou and Linda have been allowed one 20 minute call to Justina per week. They are also allowed to have a one hour visit every Friday, but the visits are monitored. Justina has had to resort to slipping her parents notes hidden in origami figures, but when the hospital discovered what she was doing, she was forced her to undergo what the hospital calls ‘behavior modification’ but what Lou Pelletier calls torture.
After a year of treatment for her so-called mental disorder, Justina has gone from an outgoing and energetic teenager to being paralyzed from the waist down, which fits with the mitochondrial disease she was originally diagnosed with. Her speech is now slurred and she has trouble swallowing so much so that her mother fears Justina may choke to death.
Dr Mark Korson, a pediatrician who treated Justina at Tufts Medical Center for the mitochondrial disease commented in an email, saying:
“I am dismayed. … It feels like Justina’s treatment team is out to prove the diagnosis at all costs. … The (Boston Children’s Hospital) 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.”
The hospital has been acting more like prison guards than doctors. They even obtained a gag order from a judge to prevent the Pelletiers from speaking publicly about what is happening to their daughter. We Lou recently spoke with TheBlaze, he was charged with a contempt of court citation.
But what has happened to the Pelletier family is not an isolated case. According to the Boston Globe:
“In just the last 18 months, Children’s — which given its reputation attracts many of the toughest cases from across the Northeast — has been involved in at least five cases where a disputed medical diagnosis led to parents either losing custody or being threatened with that extreme measure. Similar custody fights have occurred on occasion at other pediatric hospitals around the country.”
“It happens often enough that the pediatrician who until recently ran the child protection teams at both Children’s and Massachusetts General Hospital said she and others in her field have a name for this aggressive legal-medical maneuver. They call it a ‘parent-ectomy.’”
“The child’s medical record usually contained references to the parents being highly stressed and difficult to handle. And when the parents in most of these cases rejected the suggestion by doctors that the child’s problems were more psychiatric than physical, that sparked the medical team’s concern, paving the way for the call to the state child-protection agency.”
“Boston Children’s Hospital took custody of one 5-year-old around the same time that Justina was admitted. Just like Lou and Linda, the girl’s parents were also escorted out of the facility by security. The 5-year-old’s first night in the hospital was the first time she had ever spent a night without a family member.”
“In another case, the hospital tried to take custody of Jessica Hilliard’s son Gabriel, who is being treated for mitochondrial disease. Hilliard said, ‘The fact that Children’s has so much power that they can get us in trouble with a totally different hospital across the city is appalling.’”
In the case of Justina Pelletier, how can they justify the fact that under the previous diagnosis of having a mitochondrial disease and treatment she was an active athletic teen; but under their diagnosis and treatment, Justina is paralyzed, has slurred speech and difficulty swallowing? It appears that Boston Children’s Hospital will do everything they can to justify their actions, even if it kills Justina, which it seems they are well on their way of doing.
Parents, if you live in the Boston area and your child is being treated by a physician for any kind of disease or condition, you may want to think twice before taking your child to the Boston Children’s Hospital for any emergency. You too could lose custody of your child if their doctors disagree with your doctor and insist on other treatment.