Mass General is a different hospital entirely
Ah, so her care was at Children's Hospital in Boston, not MGH.
Had read her care was at MassGen.
the case is as presented (and as I've said, there seems something more than meets the eye here), whether we are talking Hopkins, Baylor, Emory, Yale, Mayo the facility actions are inexcusable.
Reading further, it sounds like Boston Children's has a problem with the Mito Disease Dx in general.
But this hospital — Boston Children’s Hospital — is now the target of national debate regarding practices that have resulted in children being taken away from parents. It’s being called the “dark side to Children’s.”
Not only is there the case of a Connecticut teen (Justina Pelletier) who has been held at Boston Children’s Hospital for 10 months after her parents lost custody of her over accusations of medical child abuse – something they vehemently oppose — but there are now a handful of other similar stories coming to light where parents were stripped of their ability to oversee their child’s care at Children’s.
Jessica Hilliard is one of them.
Hilliard’s relationship with Boston Children’s Hospital dates back to 2006. Her daughter, Eithene, was born with multiple birth defects, so Jessica and her husband would live at the hospital for hundreds of days a year over the next five years.
When she was 2 1/2 years old, the Eithene’s condition began to worsen. Combining knowledge from her own scientific degrees – Hilliard currently studying for a Masters in bioethics – and doing her own research, as many parents with access to the Internet these days would also do, Hilliard suggested to hospital physicians that her daughter be tested for mitochondrial disease.
This is the same complex disease that 14-year-old Justina Pelletier was diagnosed with, something her parents had been treating her for and something Boston Children’s disagreed with when the Pelletiers brought her into the hospital for the flu. This heated disagreement led to state involvement and, 10 months later, Justina is still at the hospital, seeing her parents only once a week as they continue to battle for custody of her.
“When we approached Children’s with the possibility it was [mitochondrial disease], we were immediately met with resistance,” specifically from the hospital’s genetics and metabolism departments, Jessica Hilliard said.
But they kept pressing and eventually had a sample of muscle tissue taken from their daughter’s thigh. The mitochondria in the cells of this tissue and other genetic aspects would be analyzed. This test, Hilliard said, was the “gold standard” for a mitochondrial diagnosis at the time it was conducted on her daughter. The disease, which is the result of a cell’s mitochondria (the energy producing organelle) not functioning properly, can manifest itself is a variety of ways and is therefore difficult to diagnose and has been confused with other disorders.
Cases of misdiagnosis have included somatoform disorder, which is what the hospital says Justina Pelletier really has — a psychiatric disorder that puts the symptoms she’s experiencing all in her head. In the last couple of decades up to just a couple of years ago, there have been reports from the National Institutes of Health describing cases of mitochondrial disease being initially misdiagnosed as somatoform disorder.
Hilliard said the genetics department that had analyzed her daughter’s muscle sample “didn’t believe the results,” which favored a diagnosis of mitochondrial disease. Instead of telling the Hilliards of this initial finding, the mother said doctors withheld the information for three months while they got another specialist elsewhere to test the sample as well. That specialist eventually agreed with the mito diagnosis.
Again, hard to discern where spin stops and truth starts in these stories. However, Mitochondrial Disease is real. Treatment techniques are in early iterations and are often experimental. There is a contingent of """old school""" facilities/physicians who pooh-pooh the diagnosis altogether. Boston Children's sounds as if it may possess more than its share of those old-schooler's.
This post was edited on 3/26 at 7:18 pm