For a little background, in 2012, Justina was diagnosed with a mitochondrial disorder by Dr. Mark Korson, Chief of the Metabolism Service at Tufts Medical Center. After suffering a bout of the flu in 2013, with subsequent gastrointestinal problems, Dr. Korson recommended she see her former gastroenterologist, who had moved from Tufts to Boston Children's Hospital (BCH). When she was admitted to the ER, the BCH physicians questioned the mito disorder diagnosis and suspected, instead, that she had a somatoform disorder. Justina's parents disagreed with BCH's proposed psychiatric treatment plan and were going to take her out of BCH to continue her mito disorder treatment. Fearing that this would delay proper psychiatric treatment and result in unnecessary medical treatment that would put Justina at increased risk of harm from the drugs prescribed for mito disorder, the BCH physicians called in the Department of Children and Families, fearing medical child abuse.
Thus began a thirteen-month courtroom and media spectacle. The latest development was announced yesterday, March 25.
Judge Joseph Johnston issued his decision on Tuesday regarding whether the Pelletiers or DCF would get custody of Justina. The process to reach this point has been quite long and full of twists and turns. According to an article in the Boston Globe, Justina was originally ready to leave Boston Children's Hospital's locked psychiatric ward in June 2013, but was unable to leave because DCF had difficulty finding suitable placement, in part, according to reports, due to her parents' actions. One program in Connecticut declined to take Justina after Lou Pelletier threatened to sue the program if they accepted her. It was only in January of this year that she was finally moved from the hospital to a foster program in Framingham, MA.
The Globe article included a link to Judge Johnston's decision (PDF). Reading through it, it does not paint Justina's parents in a favorable light. For instance, it notes that:
While Justina was at Children's Hospital, the parents were verbally abusive to Justina's hospital providers. Family members of other patients complained that Justina's parents stated their children were being kidnapped by Children's Hospital. The parents threatened to have hospital personnel's licenses revoked. They threatened to call the F.B.I. They called hospital personnel "Nazis" and claimed the hospital was punishing and killing Justina.After a hearing in December, the court was considering granting conditional custody back to the Pelletiers, but it was concerned about their conduct. They reportedly threatened Justina's social worker to the point that he requested to be removed from the case. During scheduled visits with their daughter, Judge Johnston notes that rather than engaging in quality interaction with Justina, her parents instead swore at DCF personnel in front of Justina. After initially agreeing, in February of this year, to a temporary custody order with the CT DCF and placement in a program in their home state of Connecticut, Justina's parents backed out, saying they would not agree to placement anywhere but in their own home, nor would they agree to any further involvement with MA DCF or CT DCF. This caused Judge Johnston concern as to whether or not Lou and Linda would comply with any treatment plans or be able to provide for the proper medical and psychiatric care the Justina required.
Several other details were also noted in the decision. Quite early on, the court apparently tried to get the Connecticut DCF involved in Justina's case, with the aim of moving her closer to home as soon as possible. However, since CT DCF reportedly noted last summer that they were still investigating the matter and were not going to take any action, the court determined that it must maintain jurisdiction. And despite "substantiating the parents for neglect" in December last year, CT DCF still would not take on responsibility for the case and would not file a case in the Connecticut court system. And, since there was no action started by DCF, the CT court likewise refused to become involved.
In the end, Judge Johnston granted "permanent" custody to MA DCF, though Justina's parents can request a review and redetermination after six months. Since the decision was made effective retroactive to December 20, 2013, the Pelletiers can ask for a review in June of this year, rather than September. He also urged MA DCF to make even greater efforts to move Justina's clinical and legal care, as well as residence, to Connecticut, putting the court at the disposal of the parties involved to assist in this transfer.
Judge Johnston's decision is certainly a compelling argument, being a formal legal statement based on the evidence and testimony presented in court, but, as I did earlier this month, I would still urge people to take a more nuanced stance. We still do not know the details of Justina's medical and psychiatric diagnoses or treatment plans. Barring any real, unbiased details coming to light, it is irresponsible to unequivocally support either the Pelletiers or DCF. Particularly unhelpful are comments like those on this article at The Blaze. For example:
The text reads, "I would fully support any violent action taken to free this child from the government. Any law enforcement who gets in the way deserves to be shot." Other comments discuss various plans to essentially steal Justina back from state custody, such as organizing large groups of people to go into the hospital and grab her, or stopping and surrounding whatever vehicle is transporting her from her residence to the hospital, then fleeing the country. Fortunately, some voices of reason have denounced these tactics as being more harmful and good.
One problem with the parents' narrative, as they appeared on the Dr. Phil (YouTube link) show, is that they point to her condition before DCF took custody, when she was skating and apparently doing fine, to her condition after DCF took custody, where she is in a wheelchair and unable to walk. The implication is that DCF and BCH's actions led to her trouble walking. However, as reported by the Boston Globe:
They were making the white-knuckled trip from Connecticut because 14-year-old Justina wasn’t eating and was having trouble walking. Just six weeks earlier, the girl had drawn applause at a holiday ice-skating show near her home in West Hartford, performing spins, spirals, and waltz jumps.She was clearly in a poor state before BCH even became involved in her case. That was the whole reason she was taken, by ambulance, to Boston Children's. Inconsistencies like this certainly do not help the credibility of their case, nor have their frequent media appearances assisted in efforts to transfer Justina's care to a more comfortable setting, let alone her own home.
But now Justina’s speech was slurred, and she was having so much trouble swallowing that her mother was worried her daughter might choke to death.
That said, I can understand the Pelletier's position, as much as anyone not actually in their shoes can. If my child were taken from me, in my opinion, wrongfully, I would probably fight just as hard and try to keep a media spotlight on the case. And speaking off the cuff, especially over the course of a year, I'm sure my story might evolve, as well, given the malleability of memory. As I read the various reports, though, I wonder how much of the parents' behavior is being driven by outside interests, such as Rev. Patrick Mahoney, who has been a very vehement opponent of Boston Children's, DCF and the court in this case. Are the Pelletiers' supporters fanning the flames, so to speak? They don't appear to be helping matters, at any rate.
At this point, though, we still have two conflicting accounts: the Pelletiers' story and the state's. We have only reports, not original source documentation or details. Judge Johnston's decision does add some information, but it is still too short to make any firm conclusions as to who is in the right. What makes this whole case particularly difficult to comprehend is that it is not a case of a reputable health care institution vs. a quack. It involves two reputable hospitals, each reaching a different, controversial diagnosis: mitochondrial disorder, which is rare and poorly understood, or somatoform disorder, which is also rare and poorly understood. Both are difficult to diagnose and have few definitive tests. I stand by my earlier post and would encourage others to keep in mind the points I made there, particularly the sections on if the parents are right and if Boston Children's is right.