TLDR: 15 year-old-girl in Connecticut goes to a CT hospital for treatment of an ambiguous medical condition. Diagnosis is given, parents disagree with it, take her to a hospital in Massachusetts. MA hospital alleges neglect (or something), MA Child Protective Services are called in, now MA has been given permanent custody of this young lady over what seems to be* nothing more than a family seeking a second opinion.
*DISCLAIMER: I say “seems to be” because I know nothing about the case beyond what the writers of articles I’ve read about it want me to know. Could very well be that the young lady has been a victim of horrific abuse & neglect her entire life; I don’t know, you don’t know either.
My question is: it seems as if the parents’ legal options are running out, now that a judge has given Massachusetts “permanent custody” of the girl. What options do they have at this point? Could the case make its way to the Massachusetts Supreme Court? Is it likely that the case could go to the SCOTUS?
And a bonus question: Has a child custody case ever gone before the SCOTUS?
Reading between the lines of the court documents linked in the linked article: the parents are nutjobs. The court believes the parents should be evaluated by a shrink but wants Connecticut to order it. At every turn the parents have been uncooperative and abusive to those involved. The actual allegations listing why the parents are unfit are usually sealed and private. The state can’t release it. The parents don’t seem to be releasing that information either, instead they are just calling everyone Nazis.
As to the “permanent” part. That simply means the state does not have to continue coming back to court to continue the custody. There are provisions for the parents to continue to come back and prove that they have met the provisions laid out by the court. It does not mean that the parents have no recourse and can never get custody again.
I recall in the news the occasional case where a medical condition has been misdiagnosed as child abuse. The ones that come to mind would include a baby with brittle bones (repeated fractures were taken as due to abuse) and a medical condition that resulted in frequent easy bruising. In most of these cases, the child was too young to answer questions coherently so medical personnel jumped to conclusions and erred on the side of caution.
I’m trying to imagine the circumstances where a 15 year old would be apprehended due to abuse. In this case, it was not so much about actual abuse (reading between the lines). It seems the parents are erratic and fly off the handle, unable to behave rationally. There’s the key - the state is saying the parents are not fit, so it has no choice.
Whether any whacko should automatically lose their children is and interesting dilemma. Presumably the court does not believe the parents will properly seek treatment. Presumably they court belives the Boston doctors that this is psychological, and that the parents’ refusal to believe this means the child will not get proper treatement.
Normally, by the age of 15, a child has a fairly strong voice in what happens in custody disputes. But in this case, the child’s mental state is called into question.
i woul be surprised if the judge did not request a third party evaluation to confirm this.
Here is a long history of the case from the Globe.
The parents’ anger doesn’t help them, but keep in mind that from their point of view, Boston Children’s not only locked their daughter in a psych ward unwarrantedly but also is denying her the treatment that she actually needs. Maintaining one’s composure at all times in that situation is a lot to ask.
Keep in mind that this isn’t a case of faith healing or alt-med. The girl was being treated for mitochondrial disease by an expert at Tufts, who had considered and rejected the psychiatric diagnosis. The parents maintain that that is the proper treatment and that it need s to be resumed. BC not only disagreed with the Tufts diagnosis, they deemed it to be abusive of the girl. Essentially, they think that the parents have Munchausen’s by proxy and have been manipulating the physicians at Tufts. That was the basis of BC’s call to Massachusetts DCF. According to the Globe article, BC has done this once before in case of mitochondrial-disease diagnosis (and a couple of other times with regard to other rare disorders). The article implies that BC thinks mitochondrial disease is a fraud.
The court’s order indicates that the judge accepted the psychiatric disorder after a contested hearing, so that tends to support the BC diagnosis. And the fact that the parents have not submitted to psych evaluations themselves suggest that they’re not doing everything they could to disprove the BC diagnosis (maybe they’re being told that such evaluations could be used against them in any event). On the other hand, the Globe suggests that DCF withheld evidence about the Tufts diagnosis from the court. And there seems to be no suggestion that the psychiatric treatment has improved the girl’s condition (although I haven’t seen that the Tufts treatment was helping either).
Whatever the right and wrong, it seems to me that the parents ought to spend the next six months being docile and kissing every ass in sight.
Good post. I am appalled by this case; nutjobs or not, it sounds like they were doing their best to seek and follow medical advice from well-established doctors who are experts on mitochondrial disease. Sadly, it is common for patients with mitochondrial disease to be accused of having psychological disorders because the signs and symptoms can be vague, the problem is rare and/or underdiagnosed enough many doctors have NEVER had a patient with a diagnosed mitochondrial cytopathy, and the brain is one of the organs most commonly affected, which means that the mito population is at high risk of having neuropsychiatric dysfunction in addition to other problems. It is also common for children with severe mitochondrial disease to have relatives with “soft signs”, i.e., much milder symptoms that would not be diagnosed as mito of their own accord but fit when looked at in retrospect; it is common for the disease phenotype to become more severe in each generation. In other words, relatives of mito patients may carry the mutation and may have some wonky mitochondria causing subclinical neuropsych disturbances that would make them seem “off”, moody, etc. Even if that’s not the case with Justina’s parents, if think about having multiple children with a poorly understood, incurable, sometimes terminal (and having to have large parts of the GI tract removed because of dysfunction doesn’t sound good) disease, it is understandable that Justina’s parents might have looked “difficult” even BEFORE the psych department got called in.
As for the Tufts treatment, mitochondrial cytopathies are not only incurable, the current treatments suck. All we have are supplements that may help patients with specific cofactor deficiencies as part of their syndromes and that may help prevent further damage to the mitochondria and cells as a result of increased oxidative damage from the inability of the mitochondria to do their jobs. The rest of any treatment is aimed at palliating any effects that mito has had on the patient’s body, such as drugs to promote GI motility (a common problem in affected patients), heart drugs for cardiomyopathy, ventilatory support for patients with weak respiratory muscles, etc. Mito is a heterogeneous group of disorders and some patients stabilize and are quite functional most of the time, while others follow an inexorable downhill slide towards an early death, and everything in between. It is unlikely that the Tufts treatments were making her well, but it sounds like they were at least providing appropriate symptom palliation and possibly slowing the progression of her disease course.