It sounds like a parent's worst nightmare. You take your child to the hospital with the flu, only to be told the long-time disease you thought she had -- and were treating her for -- was misdiagnosed. But you disagree with the doctors. You want to take your child elsewhere, but protective services get involved and take custody -- for months and counting.
Justina Pelletier, who was diagnosed with mitochondrial disease by one institution, has been held for nine months against her parents' will at Boston Children's Hospital, which believes she has somatoform disorder. (Image source: WTIC-TV)
That's the reality for a Connecticut family whose daughter they had been treating for mitochondrial disease, but it's also the reality for many more families of similarly diagnosed children, Cristy Balcells, executive director of the MitoAction told TheBlaze.
"Mitochondrial disase is complex," Balcells, whose own daughter also has the condition, said. "It's not uncommon for families to be questioned when children don’t respond as they’re expected to (to treatment)."
In the case of Justina Pelletier, the 15-year-old was taken to Boston Children's Hospital when she got the flu in February. The parents said doctors at the hospital accused them of "over-medicalizing" their daughter, saying that she didn't have mitochondrial disease but somatoform disorder, a psychiatric condition.
Pelletier has been at Boston Children's for the last nine months, something her father, Lou, called "kidnapping."
"In this case, this child was diagnosed at one institution. The parents, very typical of any with a child with mitochondrial disease, were following what they were told to do, seeking more opinions," Balcells said, pointing out that mitochondrial disease can impact any organ system and therefore requires different specialists for treatment.
"This situation is an example of something that has happened frequently in a horrifying amount of numbers in past five years," she said. "More children are being diagnosed with mitochondria disease. There's a lack of understanding about the disease and it becomes a situation especially in academic hospitals … with many people involved in the decision making process. The erratic nature of symptoms causes a great deal of confusion among hospitals."
Justina Pelletier sends her parents notes. Without custody, her parents can visit her once a week and call her twice each week. (Image source: WTIC-TV)
When a doctor's assessment trumps a parent's wishes
Beth Maloney, a lawyer and activist, knows a thing or two about questioning a doctor's first diagnosis. Her son Sammy was diagnosed as mentally ill, with OCD and with Tourette syndrome a few years ago. She fought for further tests and later found out he had a strep infection (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep) that was attacking his brain and causing these symptoms. He was treated appropriately, and her son to this day does not have a mental illness.
Maloney said she has been contacted by families in similar situations to the Pelletiers. They disagree with a diagnosis or wish to go somewhere else for another opinion and lose their children to child protection departments.
The way Maloney put it, hospitals will file petitions with courts regarding a parent's lack of cooperation or citing medical negligence, and the court will "rubber stamp it and you lose custody."
Tom Roberts, a constitutional and civil rights attorney in Virginia, weighed in on the topic of medical decisions and parents rights.
"The parent is constitutionally entrusted and has the right to care for that child, unless they can demonstrate that the parents have turned a blind eye to some gross medical malpractice," Roberts said. "It’s not up to the state to jump in and choose one expert over the other."
Parents have called upon Maloney to help them get their children out of the hospital. In one case, she said a girl was at Boston Children's Hospital for seven months. Maloney said it took two of the city's most prominent doctors to review her files and testify in court in order to have the girl released back into the custody of her parents.
Maloney said she has heard of and been involved with more custody cases involving Boston Children's Hospital. A Facebook group was recently established to protest the hospital "stealing our children from us."
For various patient privacy laws and other statues with the case, the hospital is not providing comment on the situation, but Maloney said she isn't surprised about this.
"They'd say 'we can’t talk about medical treatment without parental consent,'" Maloney said. "Who has parental consent now? The [Connecticut Department of Children and Families]. If you ask department, [they'd say] 'it’s a child protection case so we can’t comment.'"
TheBlaze contacted the Connecticut Department of Children and Families but a representative was not available for comment in time for this posting.
"Boston Children’s defines mitochondrial disease differently than Tufts [Medical Center, another facility where Justina received treatment], and they’re going to prove that Tuft is wrong," Maloney said. "All about ego."
Is a complex disease confusing the situation?
Mitochondrial disease, which can be inherited, spontaneous or the result of toxicity, involves a defect of the mitochondria, the organelle inside cells that produces energy. A failure of the mitochondria to produce energy adequately can manifest itself in a variety of ways depending on the organ system it is impacting. Some of the most common symptoms, which can come and go depending on various environmental factors, include poor growth, muscle weakness, neurological issues, vision and hearing problems, learning disabilities, heart, liver or kidney disease, gastrointestinal disorders and more.
Every cell in the body has a mitochondria, frequently described as the cell's "power house." Those with mitochondrial disease exhibit a variety of erratic symptoms which can make it hard to diagnose and treat. (Photo credit: Shutterstock)
Diagnosis involves reviewing a patient's familial history, clinical symptoms, metabolic lab work and DNA testing. One of the hallmarks of the disease, Balcells said, is multiple organ systems being affected.
Balcells said a diagnosis of mitochondrial disease and somatoform disorder could not be confused.
"In this case, I think somatoform disorder was a way of placating the situation by using a medical term so the hospital could take over and pursue another diagnosis," Balcells said.
Families are told to go to endocrinologists, cardiologists and a various other specialists depending on their children's symptoms.
"Each specialist has their own test," Balcells said. "It's not a patient’s fault that those health care teams don't communicate with each other. Parents are doing the best they can to follow what they are told to do."
For now, the Pelletiers wait for their next hearing date in December.
Balcells and Maloney appeared on The Glenn Beck Program Monday to discuss the case, mitochondrial disease, and the issue of patient custody. You can watch a clip from the segment, below:
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