"Suffering the Slings and Arrows of Outrageous Fortune"

I have said that the Justina Pelletier case hits very close to home for me. Anyone who has a child with a rare, chronic, invisible illness, is at risk of becoming a victim. Here is why:

The following is a ‘predator profile’ of Medical Child Abuse perpetrator from an American Academy of Pediatrics document (the section I am specifically discussing starts on page 60, although I recommend you read the whole thing – it is enlightening) covering Munchausen’s by Proxy, which is now a much broader category called Medical Child Abuse. This is the charge against the Pelletiers – that they have subjected a healthy child to unnecessary medical treatments. The following is a list of characteristics which the authorities look for in deciding if parents are medically abusing their child. Now, if you read this with the eyes of a parent of a chronically ill child, it is a profoundly disturbing thing…

Take a kid with a rare, poorly understood, invisible chronic condition who has loving, concerned parents who are strong advocates for her. Throw in a couple doctors with an agenda and a skewed perspective of rare diseases who can make lots of money if they force a long inpatient stay for their pet psychiatric diagnosis, gaining ‘evidence’ and a case study to publish and you have a recipe for disaster.

Reading it, I can easily see, with a bit of spin, how any parent of a chronically ill child could be accused of this, including myself. Take a look and see if you fit the criteria listed in this:

Perpetrator Profile

1) Interest or expertise in medicine

I had no interest in medicine until my kid got ill. Then I strangely took a really deep interest in it, particularly after the doctors seemed to have no clue what could be wrong with her. That is my perception but, then again, who knows what the doctors think of me…

I have certainly butted heads, even prior to the EDS diagnosis, with doctors. Since then, I have gained enormous confidence in my own research and knowledge and I am not afraid to share what I know. Furthermore, I know my kid far better than a doctor who sees her for 5 minutes and so I have always seen the doctor/parent relationship as a symbiotic one, with both sides complimenting each other and seeking answers.

Then there are the times when one doctor tells you something, but doesn’t go quite as far in the written record and the parent is left looking like a fool (or worse) when they bring it up later. I remember one time when Em was a toddler, she had a lung x-ray because she was coughing and miserable with an upper respiratory infection. The ER doc said it was pneumonia and gave her antibiotics. At the follow up, with a doctor in the practice who was not her regular pediatrician, a second look at the films prompted him to say he saw nothing indicating pneumonia. So, did she have pneumonia or not? To this day, I do not know.

My default has always been to believe the doctor who makes the most sense in the situation, because, hey, doctors are human too, but that seems fraught with danger now. In retrospect, I realize that arguing (or even just stating) that another doctor said x,y, or z could look bad for me.

2) Life revolves around child’s illness

When you have a child who is really, really ill, everything in your life changes. Your focus is centered right on that child and you are committed to do whatever you need to do to get them better. All your priorities change and your life revolves around this storm that has descended upon you. Yes, you still live and have a life: you work, you fix meals, you do laundry, pay the bills, you care for your other children and you carry on. You put a good face on for the world and you really do try to find joy and peace (and especially you try to provide it for your child so they can have some semblance of a normal life) wherever you can find it.

But, in certain seasons and during certain phases of the storm, your life revolves entirely around your child’s illness. And, when the illness is NEVER going to go away, when it is a life-long, chronic condition, there is no chance to forget about it. It goes with you everywhere and you cannot escape it. So, you accept it as a part of your life and do your best with the cards you have been dealt.

This is called being a loving, responsible parent and I would defy any of these ‘child abuse experts’ to tell me this is not normal.

3) “Good parent” or martyr.

Well, I certainly don’t see myself as a martyr but I do try to be a good parent…I thought that is what parents are supposed to do.

But, in the world of medical child abuse – the world of Boston Children’s Hospital and DCF – you are damned if you do and damned if you don’t. How can the parent of an ill child win in that system? You get dinged if you don’t act appropriately and you get dinged if you do. Is there some middle ground where we can be above the threshold for being a “bad parent” but below the threshold of being that incriminating “good parent”?  If so, how is that defined? Who defines it? Or maybe, the truth is there is no threshold or definition and it is just the opinion of one doctor who has a vested interest in a certain diagnosis.

If caring about my child makes me a “good parent”, I am guilty. If learning about my child’s condition so I can be an effective advocate makes me a “good parent”, I am guilty. If knowing more about EDS than most of her doctors makes me a “good parent”, I am guilty. If having the strength to question questionable treatments or to advocate for treatments I think are necessary makes me a “good parent”, I am guilty.

4) Overly comfortable with medical staff.

This one is difficult as well…my husband works at our local hospital. He knows everyone there. When my daughter goes to PT, the PT is inevitably a good friend of my husband. He knows many of the doctors we see because he works with them. We are quite comfortable there. But, how would that look with the right spin?

When we go to Children’s, I am usually very uncomfortable, but I strive to be confident and friendly because I know it is necessary to foster these relationships. I wouldn’t say I am overly comfortable with the staff, but that is my perception, which matters not one iota in this situation. I recall when Emily had her appendix out at Riley Children’s – her nurses were great. One of them actually had a best friend with EDS and was fairly knowledgeable about it… we felt pretty comfortable with her. How is that a sign of anything but normal human interaction? Should I make a show of being visibly uncomfortable so as to not incriminate myself?

5) Does not appear relieved with normal test results.

Ugh, guilty on this count as well. I don’t even know how many times we have had normal results on tests when we knew something was wrong. When you know something is wrong, a normal report is not very comforting. I have prayed so many times,’God, please let them find something that we can fix.’ In the beginning I prayed for normal and that stopped being helpful pretty quickly. That is when I started with the ‘let there be something we can fix’. Honestly, when your kid is battling a rare condition, normal is not even an option most of the time.

Forgive me if I am less than thrilled when my kid is hurting and I drag her off to see the doctor, which makes her hurt more, only to hear you say that you have no idea what is wrong. You order an expensive test that is going to add to our medical debt and then it shows nothing, which prompts you to shrug and send us on our merry way. And my kid continues to hurt with no offer of help forthcoming. I bet you wouldn’t be thrilled either, doc, if you were in my shoes and it was your child.

6) Promotes invasive tests and procedures.

Again, my perception is no, but could it be spun otherwise? I am afraid so. I hate for her to have blood work, but there have been many times when I have politely demanded it. I have asked for MRIs. I have said things like, “Look, we have to do something. What is your suggestion?”

Does that mean I promoted the DHE infusions that the neurologist ordered? In truth, I was skeptical but willing to try anything at that point. I have ‘promoted’ for a gastric emptying study (results came back normal; see # 5). I wouldn’t say I ‘promoted ‘ for her scope because I really didn’t want it, although I know it was necessary.

I have however ‘promoted ‘ for being referred to doctor’s who ordered said testing. And I have loudly ‘promoted’ for certain meds that I strongly felt would be helpful. So, while I don’t think I am guilty of this one, I know it could be spun against me. Again, who knows what the records might say.

When Em was 5, she had strange allergy type symptoms, so I got a referral to an ENT. We tried a few things and nothing helped; her sleep was being impacted and she was complaining about being uncomfortable during the day. We ended up agreeing to have her tonsils out. Did I set that in motion or did the doctor? I suppose it depends on how it is spun… Justina had her tonsils out and that is one of the invasive procedures the Pelletiers are accused of promoting.

7) Enjoys being in the spotlight.

Nope, I do not like the spotlight. I am actually pretty introverted and feel very uncomfortable in the spotlight. However, I do have the ability to sacrifice my personal comfort for a worthy cause. And my daughter’s health is a worthy cause. I frequently speak out on Facebook, but that is not for me – it is for her and the millions like her. To my mind, that is a somewhat wiser and higher purpose for Facebook than sharing cat videos and pictures of a shirtless Matthew McConaughey – but, hey, I could be wrong.

However, I am suddenly poignantly aware that blogging could be construed as seeking the spotlight, even though I truly didn’t expect anyone to read it when I started – I just needed a place to vent. Likewise, the book Emily and I are writing could be a strike against me.  That I could be penalized for finding a positive outlet that preserves my mental health makes me angry – and a little nervous.

The scariest part is that this, like most of this list, is a totally subjective label. Medical professionals only see a small slice of anyone’s life at any given time – at best, a few minutes here and there. And to make such a subjective declaration that can destroy someone’s life based on such a tiny portion of time is a very serious power to wield.

8) May have personality disorder, Munchausen syndrome, or somatization disorder.

Um, no. Don’t think so. Thank you very much. And I do not buy into the idea that there is an epidemic of Munchausen and other extremely rare mental conditions. Back in the day, when I was majoring in psychology, I was taught that all of the above are rare. Not EDS, POTS, Mito,  MCAD ‘rare’ as in underdiagnosed and misunderstood, but really, actually rare.

And only an extremely lazy, unthinking, unethical doctor would use those conditions as a default diagnosis. But, there I go again, knowing too much and showing medical knowledge in an incriminating way. (See point 1 above)

9) Not really accurate or helpful in diagnosis.

Yay! Finally, one that I can say ‘not guilty’! Because I have been pretty darn helpful in diagnosing my daughter and accurate to boot. Very helpful and accurate….hmm,  maybe too helpful and too accurate? And now we are back to the beginning of knowing too much about medicine and into ‘good parent’ territory (points 1 and 2 above). So, I guess I just can’t win…

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This profile is part of the reason the Pelletiers found themselves in their current nightmare. Because, when faced with an invisible illness, a couple doctors with an agenda decided that being involved, concerned parents is a bad thing. It is far too easy to see how one can walk right into the trap laid by this profile. Justina’s family is not alone in this experience. At Boston Children’s Hospital, there are several cases that are eerily similar. Some of those kids died. Some have been or are in the process of being adopted. A few have been successfully returned to their parents after long and costly legal battles. And that is only BCH. It is happening around the country, unfortunately.

If you are parent of an ill child, I imagine you have a sick feeling in the pit of your stomach right now. When you look at the above list, it is all too easy to see how something completely innocent and natural could be spun into something sinister. Reports say that the Pelletier’s were ‘difficult’ – that Lou had no problem rocking the boat and that Linda was a formidable advocate for her daughter. Most of us would wear those labels as a badge of honor! But I have no doubt that some medical professionals might not see such behavior as a badge of honor, in my case and many others.

Now, obviously, I know that real abuse happens. And, as an enlightened society, we must do all we can to protect the innocents. I know that Munchausen Syndrome By Proxy exists – there are documented cases. There are parents who are mentally ill, who actually harm their child in order to receive medical attention. I happen to think these cases are pretty rare, but I do acknowledge their existence. I also understand that as time marches on, we change definitions and labels so we can better help those in need. But, this new definition of Medical Child Abuse is nuts – it is way too broad and subjective. And it puts the most fragile of our innocents in harms way. Harm being the kind of ‘care’ Boston Children’s Hospital provides in these situations.

Clearly, there are times when a child must be separated from their parents to keep them safe. But, the mental illnesses that this document refers to are not the norm and there is no epidemic. Separating a child who might actually be ill from their family should happen only when there is an absolute certainty of abuse. That requires an open mind to evaluate all pertinent medical records, time to speak to all physicians and specialists, and a willingness to consider that this child could actually be a zebra and not a horse. That did not happen in Justina’s case.

There are a lot of layers in this case and I am planning on addressing some of them in the next days – this concept of Medical Child Abuse is intertwined with the insidious Somatoform Disorder diagnosis which is intertwined with profit and parents’ rights and so on. For those who would argue that Justina could only be taken away if there was a real problem with the parents – that the authorities couldn’t possibly lie or have ulterior  motives, I would have you study the above list and consider the subjective nature of it. Consider that the ‘missing piece’ here is wrong doing by the people with power.

I also want to point out that I don’t think that kids with rare diseases are being taken away from their parents in droves. Certainly this happens and does seem to be fairly epidemic at Boston Children’s, but I don’t think we should panic. We need to be wise and proactive and continue on with the knowledge that we are guilty only of ensuring our kids have the best care. Yes, the Pelletiers knew their rights and it didn’t help them, but we still need to be good, informed patients and behave accordingly. We need to understand the system and how it works. We need to know how these people think, so we can avoid falling into their trap. We need to continue to be a part of a medical team that cares for our children – keep fostering those relationships and work towards getting the best care possible.

And, we need to keep fighting for Justina so that she can go home and so things change and no family ever goes through this again. We can support a Justina’s Law if it ever gets proposed – a law that would protect a family’s right to seek a second opinion.

We need to stick together and fight this fight as if it were our own child in the center of it – because we know in our hearts that it could be and that there but for the grace of God go each one of us.

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