Two more rallies are planned this week for Justina Pelletier, the 15-year-old West Hartford girl who, her parents say, has been held hostage by Boston Children’s Hospital for the last 10 months.
The rallies are scheduled in Boston at the Suffolk Probate and Family Court, 24 New Chardon St., for Dec. 10 and 12, which coincide with the next court hearings to determine Justina’s custody.
Justina’s bizarre and tragic turn of events started on Feb. 10, when Justina, who has been diagnosed and treated by Tufts doctors for mitochondrial disorder, a rare genetic disease, was sent to Boston Children’s Hospital for a bout with the flu.
Justina’s regular doctor was unavailable at the time.
Doctors at Boston Children’s Hospital reportedly said that Mitochondrial Disorder does not exist and diagnosed Justina with somatoform disorder, a mental illness characterized by pain and gastrointestinal symptoms that have no identifiable physical cause.
Since that day in February, the Justina Pelletier’s parents - Linda and Lou - have seen the situation devolve into the Massachusetts Department of Children and Families taking custody of the girl and limiting contact with Justina to just one hour a week, with two 20-minute phone calls (which are monitored by hospital staff). Justina’s condition has also worsened.
But people have rallied behind the Pelletiers as well.
In November, after hearing news reports of Justina’s case, West Hartford resident Heather Harwood, who has two children with mitochondrial disorder, threw her support behind the Pelletiers.
“I’ve been trying to do everything I can,” she said in a telephone interview. “We came up with the idea for rallies. ... We’d like support [for Justina] to let people know we’re not just quietly going to let them take her away and not let her voice be heard.”
Harwood said that she also fears that the Pelletiers’ case could one day be hers.
“Both of my kids were hit with the rotavirus stomach bug last April and they were in [the hospital] for two weeks,” Harwood said in a telephone interview Sunday. “I was terrified. … It’s incredibly scary. What happens if they are at school and are transported elsewhere [other than their treating physicians]?”
At the last court hearing on Dec. 5, about a dozen people showed up outside the courthouse to show their support for Justina, the Pelletiers and the mitochondrial disorder community, Fox CT reported.
Harwood isn’t the only member of the mitochondrial disorder community to support the Pelletiers.
Cristy Balcells, the executive director of MitoAction, a mitochondrial disease action committee, sent on Sunday a letter to Sandra Fenwick, the CEO of Boston Children’s, imploring for Justina’s case to be investigated. (The letter can be found on MitoAction's Facebook page here.)
“As you are surely aware, the family in question has documentation that every test, every procedure and every medication was requested by a board-certified physician,” Balcells wrote. “In fact, Ms. Fenwick, I earnestly ask you to consider that the plight of this family is one faced by many families across the country when their disease is misunderstood.
“On behalf of the mitochondrial disease community, I am asking you to employ common sense and investigate the details surrounding this case. Upon doing so, you will find that since this child's mitochondrial disease treatment regimen was removed in April of 2013, she has dramatically decompensated. The patient is weaker than she has ever been before. Further, despite being under the care of a team of physicians in your hospital for a number of months, she is not ‘better’. Despite being removed from the care of her attentive and loving family, her disease state has not ‘reversed’ but has progressed.”
The case has garnered attention in the U.S. and the international community.
Neither Boston Children’s Hospital, nor the Pelletiers could comment on the matter as a result of a gag order a judge imposed from the bench during a hearing in November.
Boston Children’s issued the following statement to West Hartford Patch on Dec. 2:
Our staff are caring and supportive professionals who aim to provide the best and most appropriate care for each and every child, regardless of diagnosis. We believe in a multi-disciplinary, family-centered approach to care, and we do our utmost to support patients and their families. The Hospital is not the custodian or the legal guardian of the patients in its care, nor is it affiliated with any state agency. As a matter of policy, Boston Children’s is unable to comment publicly on specific patient care matters or on any situation in which state child protective services is involved.
While Boston Children’s said it does not take custody of children, it did issue a Feb. 13 order, pictured on the Daily Mail, prohibiting a second opinion being sought and limiting the number of doctors working on Justina’s case.
That order apparently came before the date on which Massachusetts Department of Child Services got involved.
Regardless, Harwood said that the hope is that Justina is returned to her family by Christmas.“That is the goal,” Harwood said. “She has missed so much. That is the ultimate goal.”