One year ago, Linda and Lou Pelletier took their daughter Justina, ill with the flu, to a hospital in their home state of Connecticut. That hospital advised Justina should be transferred to Boston’s Children’s Hospital … it was then the nightmare began.
Justina, now 15, suffers from mitochondrial disease, as explained by Liz Klimas of TheBlaze, a genetic disorder which is very complex and demonstrates itself in a variety of ways depending on the organs in which it establishes itself. It is a defect of the mitochondria, the organelle inside cells that produces energy. The very fact the disease is so varied and may cause differing symptoms in each person affected has gone a long way to causing this terrible situation, both for Justina and for her parents. She was diagnosed with the disease several years ago and has been regularly seeing physicians at Tufts Medical Center who have been providing care and treatment such that, though stricken with painful and uncomfortable symptoms at times with medical and insurance-approved procedures done to alleviate those, she has been able to live a reasonably normal life.
The hospital transfer scheduled for February 13, 2013 was required to be done by ambulance in order to be covered by insurance. She was to meet with a gastroenterologist in the ER of BCH but instead, she was evaluated by a neurologist, who, according to Mr. Pelletier, never looked at her medical records or spoke with her long-time physicians at Tufts. No, this doctor decided with the barest of information and hardly enough time for a thorough history and evaluation that Justina had been mis-diagnosed all those years ago. He determined that rather than suffer physical disease, she was imagining it all in her mind – he called it somatoform disorder– we used to call this “faking it” back in the day, hypochondria.
Justina’s father was outraged, as one well might imagine, at the notion his ill daughter was making up all her symptoms and difficulties, both he and Mrs. Pelletier voiced objection to the proposed treatment which would be to remove her from all her prescribed medications, vitamin supplements and daily routine in order to maintain that normal life and instead, put her on a regime of a “behavioral plan” formulated with input from all relevant disciplines which will day schedule, feeding and functioning plans with a therapeutic approach, with physical therapy included. BCH called in Massachusetts Department of Children and Families to get involved in order to support their reason for taking custody of Justina. When the Pelletiers returned the next day with the intent of having Justina discharged and transferred to Tufts, they were met by security guards and served a 51A, a report of alleged physical or emotional abuse. They were accused of overmedicalizing their daughter and had the custody of their daughter removed from them and escorted from the premises. For months the only contact they had with their daughter was a 20-minute phone call on Tuesdays and a 60-minute visit on Fridays, always monitored and supervised by DCF.
Justina was treated as though she was indeed mentally ill rather than suffering physical disease. Her father relates some of the cruel circumstances she has been forced to endure. She had medical personnel stabbing a finger in her face and demanding to know why she would allow the medical procedures that were performed on her. Part of Justina’s difficulties have to do with her lower digestive system not operating properly, she could not eliminate waste in the manner you or I do. She had a special tube inserted and requires daily “flushes” as her father called them in order to assist her body but because these medical people do not believe her disease to be real, they refused to perform this necessary function for Justina. Instead they have had her sit on a toilet for two or three hours at a time, again described by her father as “behavior modification.” Can you imagine just this particular experience? Not only the discomfort of that position for so long, nor the fact she has one or more officious-type standing there watching her, but the utter humiliation of such a thing. And the agony she must be suffering inside her; if you’ve ever experienced an impacted bowel, it is likely to be a percentage of Justina’s pain, suffered at their hands on a daily basis.
On April 9, 2013, Justina was transferred to the Bader 5 psychiatric unit of BCH for the “behavioral plan” to be on-going. After several court battles with them to no successful resolution, the Pelletiers decided to take their battle public, a news team with FOX CT investigated the story for months. But when the put a piece on air and on their website in November, the judge in the subsequent court hearing in December placed a gag order on all the participants, supposedly to protect Justina, a minor. Convenient, that. Justina has since been transferred from BCH to another facility that isn’t even medical. It is to be a temporary place until the court decides on her treatment.
This horrific tale has received very little press coverage at all. Other than Liz Klimas who has provided updates as warranted, no national coverage and with the gag order in place, no local coverage as well. This past Monday, February 17th, after more than a year trying to get his daughter back into the family’s care, home, arms, Lou Pelletier has had enough. He has decided his daughter’s life is more important than any retribution that might come from violating the judge’s gag order. He contacted Glenn Beck, who has been updating his listeners all along, and the two sat together for a fathers’ heart-to-heart:
When Justina was first admitted to the Connecticut hospital she was walking on her own, able to move without assistance; since her forced hospitalization, her physical condition has decreased exponentially. She is now in a wheelchair, paralyzed from the waist down with almost no muscle control above the waist. Her father describes her appearance thus: “Her hairline is receding, gums receding, signs of malnutrition.” She has been without necessary medication and treatment for so long, pray God she was not sent past the point of no return, that when the Pelletiers win this battle, Justina will be able to recover all she has lost at the hands of these medical personnel. All have degrees of one form or another, all have had a varying length of experience in the medical field. Yet not one has had an ounce of compassion for this poor girl, no one has shown any courage whatever to yes, perhaps risk a job or career to announce to those in charge, to a member of the press, to the governor of Massachusetts, to any Washington politician with the power to end this nightmare for Justina and her parents, “STOP! This is wrong! We are killing this girl, we cannot and should not be doing this!!”
Who will stand for Justina, a young lady no longer able to stand herself? Who will stand with her parents, support their efforts to bring their daughter home with your voice, your pen, your keyboard? This is still the United States of America, by God, and as of this date, the Constitution still reigns as the supreme law of the land. Justina may be a minor but she is as entitled to Amendment IV protection as is any other citizen of this country. Her seizure was unreasonable by any definition of the word; she is being held against her will.
Who will take up her cause before it is too late?