Justina Pelletier is a 15 year old girl who was living what most would say is the American dream. She lived in the affluent suburb of West Hartford CT. She did well in school and enjoyed gymnastics and figure skating. Few outsiders would have guessed she was diagnosed with mitochondrial disease. A disease that can have all kinds of side effects.
Justina's ordeal began in 2010, when she had severe cramps because of a stomach blockage, according to her father. Doctors at Connecticut Children's Hospital unsuccessfully tried to "flush" her lower intestinal tract and subsequently did exploratory surgery, he said. Doctors found a congenital band, about 20 inches of cartilage wrapped around her colon and removed that and the girl's appendix, he said. In 2011, when her condition did not improve, he said doctors referred Justina to Dr. Alejandro F. Flores, a gastroenterologist at Tufts. In 2012, surgeons considered removing Justina's colon but eventually performed a cecostomy, attaching a device to the colon that clears the bowels of fecal matter. Flores called in Dr. Mark Korson, chief of metabolism. Justina's sister, Jessica, had been diagnosed and continues to be a patient of Korson, according to Pelletier. Justina was similarly diagnosed with mitochondrial disease. Korson treated Justina with a vitamin cocktail and various prescription medications.
Justina began treatment and seemed to be improving, but then appeared to have caught the flu. Her parents were concerned because the flu can be complicated by her mitochondrial disease, so they took her to the hospital. However this was Boston Children's Hospital. And that is where their nightmare really began....As the Boston Globe reports;
The Department of Children and Families took emergency custody of the teen on Valentine's Day 2013 after a diagnostic dispute arose between doctors at Tufts Medical Center and Boston Children's Hospital over the causes of her medical problems. Tufts doctors had been treating Pelletier for mitochondrial disease, but physicians at Children's concluded that her symptoms were largely psychiatric in origin. Her parents rejected the new diagnosis, and when they tried to move the girl back to Tufts, the Children's team notified the state that it suspected the parents of medical child abuse.
At that point the state of Massachusetts stepped in and took custody of the girl! The state decided to keep her in Boston Children's Hospital. The NY Post reports; Justina has spent the past year in the psych ward, and yet Doctors in Boston still can't conclusively say if she is or is not suffering from mitochondrial disease or somatoform disorder. Her sister tells Fox61 CT that Justina is in agony.
“Her physical appearance, just from seeing her, it’s scary. Her legs are more swollen. They’re cold to the touch. She has no feeling in her feet. She is scared and alone and wants to come home". Today that dream of returning home died. The Herald reports that Judge Joseph Johnston in Boston ruled that the State of Massachusetts will have permanent custody of Justina. And just like that, while the whole world watches, a family is destroyed and a girl will spend the rest of her childhood, and perhaps the rest of her life in a mental institution.
Her parents hired the best lawyers. They got media coverage on every news network in America. ABC, NBC, CBS, even Dr Phil! International press covered this case. Daily Mail, The Australian, The Montreal Gazette. And yet they have lost her, perhaps forever.