(Disclaimer: I very rarely get up on a soapbox without having a clear understanding of both sides of an issue. I’m always too worried about looking like an idiot and losing credibility when someone else does their homework and points out an obvious flaw in my reasoning. In this case, I haven’t been able to find the other side. I haven’t found a single explanation that may even potentially justify this. If anyone knows more about this or can speak to the other point of view, please, PLEASE, post a comment.)
Imagine you have a child with a chronic illness. Not a life-threatening illness, but a genetic disorder that you and a team of medical professionals are managing. The she gets the flu, you take her to the hospital, and your world falls apart. Not because of the flu, but because of what the doctors at the hospital do next.
This is the nightmare that one Massachusetts family is living through. A few years ago, their 15-year-old daughter was diagnosed with mitochondrial disease, a genetic condition that causes weakness and loss of muscle coordination. She’s been doing great and living a normal life. But when she was hospitalized for the flu back in February, the doctors there immediately told her parents she didn’t have mitochondrial disease; she had somatoform disorder, which is basically a mental illness that manifests itself in physical symptoms. The doctors claim that, because she (in their opinion) didn’t really have mitochondrial disease, her parents were overmedicating her and being overzealous in getting treatment for her. Her parents were escorted out of the hospital by security, lost custody, and now get only a 1-hour visit and two 20-minute phone calls a week. Their daughter has been sneaking them notes in origami.
Now, I know what you’re thinking. Sounds like Munchausen by Proxy, right? But let’s not forget that she has an actual diagnosis from a team of respected medical professionals, including a doctor at Tufts. Both he and the child’s psychologist are horrified at what is happening.
My gut tells me that, surely, there has to be more to this story. Or maybe I just want to believe that, because the alternative scares me to death. But I haven’t been able to find that “more”. And I doubt I will because a judge has issued a gag order.
Even if there is another side to this that eventually comes out, it still raises important questions about parental rights. Since when is it child abuse to not agree with a doctor’s diagnosis? How much power should the state have? With an actual diagnosis in place, shouldn’t they have to offer some scientific evidence that the other doctors have been treating her maliciously for the last few years…or at the very least, proof that their diagnosis is wrong? Shouldn’t the parents have been allowed to seek a 3rd opinion? It’s terrifying to think that having an opinion different from that of your child’s doctors could cause you to lose custody.
(Repeating my disclaimer: I’m well aware there could be information on this that would make me change my mind. But I haven’t been able to find any.)
If you’re interested in the topic of parental rights, read my post on another case here.