Family of Girl with Rare Genetic Disease Fights to Regain Parental Rights after Hospital and State Steps in and Claims Custody, saying Disease is Psychosomatic

Aimee Herd : May 7, 2014
Christian Corbin

"Mentally, medically, she looks worse. Her legs are severely swollen with edema; they told her they're fine. A child should not have edema, there's something seriously going on and they're looking the other way. …it's insane." –Jennifer Pelletier

(Connecticut)—Question: if your child was ill, but the hospital you took her to had a different diagnosis than that of your current physician and proceeded to step in and actually take your child away from you—what would you do?

That's a question the Pelletier family has had the agony of living through when, in February of last year, they were stripped of the custody of their daughter, Justina by state services in Massachusetts.

Justina had been previously diagnosed of the rare mitochondrial disease by Tufts Medical Center in Boston; the same genetic disorder her older sister, Jessica suffers from.

Both Justina and Jessica had been receiving treatment at Tufts, and it seemed to be successful, as they were able to resume normal activities.
However, in February of 2013, Justina contracted the flu, which was made much more severe by the mitochondrial disease, and she was taken by ambulance to Boston Children's Hospital.

"She was supposed to be a direct admission to the GI (stomach) floor," explains Justina's father, Lou, in a video. "But, upon her arrival at the emergency room, a young neurologist barely out of residency, and a young psychologist both said that what she had was not mitochondrial disease." (Photo via FOX News)

"They said they were going to help her get better, so we were game, we were open to a new idea or two," continued Lou.

Three days later—the staff there still had not spoken with Justina's doctor who'd sent her there; the doctor she had originally come there to see was being blocked from seeing her, according to Lou. And, then Justina's parents learned they were stopping all her medications (which had previously been working for her), and the "psychologist who confirmed a new diagnosis of a mental condition called Somatoform Disorder—despite Justina's physical condition—had an NIH grant to study that very disease."

"My daughter actually had [a previously scheduled appointment] at Tufts that February 14th, so I went up there to discharge her and take her across town to Tufts for her appointment," said Lou. "But when I got there, Boston Children's [Hospital] already had something else in mind. They had already called Boston's Department of Children and Families, and they took custody of my daughter."

"We were literally escorted out of the building with guards, given a 'No Trespass' [warning], and not even allowed to say goodbye to our daughter," added Lou. (Photo via YouTube)

Since then the Pelletiers have been fighting to regain custody of their daughter and to have her treated as had been prescribed previously by her doctor at Tufts. The Pelletiers have only been allowed one weekly 1-hour visit to see their own daughter.

This week, another development which is being seen as a "setback" by the Pelletiers has been announced, as the HHS Secretary, John Polanowicz, said that 15-year-old Justina will be transferred to a facility in Thompson, CT, which he is calling the "first step" in a process that could eventually return her to the custody of her parents, according to the Fox News report.

However, Justina's parents are furious, saying that the move is not that at all, but instead, "They're just shipping her off to another psychiatric facility…It's disgusting," Lou said.

Jennifer, Justina's sister noted that during this custody fight, her sister's condition has worsened. "They're the ones neglecting my sister," she told Fox News. "Mentally, medically, she looks worse. Her legs are severely swollen with edema; they told her they're fine. A child should not have edema, there's something seriously going on and they're looking the other way. …it's insane."

Says Lou Pelletier on their Justice for Justina website: "We are David, not against Goliath, but against two Goliaths—Boston Children's Hospital and the State of Massachusetts. To me, it's a hopeless cause, and the only way to win is in the court of public opinion."

For more information, visit a website created by the Pelletiers: JusticeforJustina.com, or watch a video report by Family Research Council, here.