"Suffering the Slings and Arrows of Outrageous Fortune"

In a previous post, I wrote about the replacing of Munchausen Syndrome by Proxy with a new, broader, easier-to-diagnose term of Medical Child Abuse. In Justina Pelletier’s case, her parents have been accused of medical child abuse. It is notable, though, that no criminal charges have been filed in the 13 months this case has been going on and, after intense public backlash,  Justina’s care is now being transferred back to Tufts where her mito diagnosis was given; both facts strongly indicate that ‘there is no there, there’.

The document I referred to in that previous post is enlightening on detailing the difference between MSBP and what is currently called medical child abuse. Here is a quick comparison of the 2 diagnoses, drawn from points made within the document, which I highly suggest reading.  As parents, we must be aware and inform ourselves of how the system works so we can protect our children. (I have highlighted the points that are most concerning to me in red.)

  • Munchausen Syndrome By Proxy: Traditionally defined as the fabrication or induction of illness in a child to gain attention. Results in needless medical intervention and treatments.                      
  • Medical Child Abuse: Definition: Child receiving unnecessary and harmful or potentially harmful medical care at the instigation of a caregiver.
  • Munchausen Syndrome By Proxy: Despite growing awareness in the public consciousness, the concept is still not well  understood by medical professionals and lay people.                    
  • Medical Child Abuse: Easier diagnosis to make.
  • Munchausen Syndrome By Proxy: Illness in a child that is simulated (faked) and/or produced by a parent  or someone who is in loco parentis.                                                                                                              
  • Medical Child Abuse: Don’t need to determine the caregiver’s motivation to know that a child is being harmed.
  • Munchausen Syndrome By Proxy: Acute symptoms and signs of the child abate when the child is separated  from the perpetrator.                                                                                                                     
  • Medical Child Abuse: Don’t need to determine if symptoms resolve with separation from the caregiver.
  • Munchausen Syndrome By Proxy:  Out of 75 cases referred to one of the creators of the new concept of Medical Child Abuse, only 38% met the criteria for MSBP, while 67% – 89% met the criteria for Medical Child Abuse.                                                                                                   
  • Medical Child Abuse: More inclusive of less severe cases that still warrant some type of intervention.
  • Munchausen Syndrome By Proxy: Psychiatric diagnosis given to the caretaker.                              
  • Medical Child Abuse: Focuses on the child victim.

Medical Child Abuse and Somatoform Disorder

So, you may say to yourself – that is all well and good, but, if a kid is really ill they wouldn’t be able to slap on a label of Medical Child Abuse – right? I mean, it would be obvious from the medical records that this kid is actually sick – right?

Wrong. And that is where the diagnosis of Somatoform Disorder comes into play. It is the flip side of Medical Child Abuse and it is absolutely necessary in the process of removing a child with a chronic illness from her parents. Let’s say a medical team suspects medical child abuse in a certain case rather than the manifestation of an actual illness. Said child has symptoms to deal with, allegedly because a parent has convinced them they are sick when they really are not. So, like the Pelletiers, the parents get accused of Medical Child Abuse and the child is diagnosed with Somatoform Disorder. At which point, the treatment becomes changing the child’s behavior so they realize they are not really sick.

It is what you have to do if you are going to label parents of a chronically ill child as abusers – you ignore the evidence and treat the ‘effects’ of the ‘abuse’ on the child. And it would necessarily require denying medical treatment for the symptoms the child has, like they have in Justina’s case, because they could not and would not undermine the belief that the child is not really ill by allowing medical treatment – in fact, in their minds, there would be no need for medical treatment because it is a mental, not physical, condition.

When the parents predictably object, Boston Children’s Hospital has the power to bring in Department of Children and Families, who moves to make the child a ward of the state.  At that point, the parent has no power whatsoever and their child has, for all intents and purposes, been medically kidnapped. And it is all completely legal. There is almost no recourse for the parents; the courts have no reason to disbelieve another branch of the government (DCF) and no independent medical knowledge to dispute BCH’s claim of Medical Child Abuse. The deck is totally and tragically stacked against families who find themselves in this nightmare. Lest you think Justina’s case is an anomaly, I should point out that there have been at least 5 similar cases in just the last couple years: one girl was finally returned to her parents after a long battle with DCF not long before Justina was admitted.

Responsible Parenting or Abuse?

Now, there are undoubtedly real abuse cases, even medical child abuse cases, which need intervention. No argument about that here. Again, I will state that we all want children who are actually being abused to be protected.

The disagreement comes in defining Medical Child Abuse. In Justina’s case, and untold others like it, the parents bring their child to the hospital requesting help for a specific medical issue (in the Pelletier’s case they were sent to Boston Children’s for a GI consult at the suggestion of their Mito specialist) and next thing they know, they are being escorted out by police and they have lost custody of their ill child just because they disagree with the doctor – and have absolutely no recourse. For a parent of an ill child, there is no worse nightmare. At Boston Children’s, it has occurred so often that they have a cute little pet name for this ‘procedure’ – a parent-ectomy.

It happens often enough that the pediatrician who until recently ran the child protection teams at both Children’s and Massachusetts General Hospital said she and others in her field have a name for this aggressive legal-medical maneuver. They call it a “parent-ectomy.”

From the Boston Globe article

Below is  the plan Justina’s parents’ refused to sign, believing as they did that their daughter’s Mito diagnosis was accurate and needed to be medically treated. And, in exercising their parental rights and not signing, and stating they wanted to take Justina back to her specialist at Tufts, they were labeled abusers. Would you sign this plan for your chronically ill child?

Justina BCHGuidelineofCare

Can any reasonable person really believe that abuse can be defined as following the suggestions of the specialist who has been successfully caring for your child or children? Can we call it abuse when a family refuses to follow one treatment plan that they believe will hurt their child and instead chooses to stick with the plan that was helping their child? Can we call it abuse when a family requests, in good faith, to seek medical care in another facility, asking for a second opinion? The obvious answer is no.

But, this is what they are calling abuse, certainly in Justina’s case but she is not the only one.  Parents of kids with Mito, EDS, POTS, PANDAS, Lyme Disease and other rare diseases are particularly vulnerable. A skeptical person might even start to think these families are specifically targeted – undoubtedly, they are easy marks. One of the clinical presentations mentioned in the Munchausen/ Medical Child Abuse document is ‘multiple organ system involvement’ (pg 28). Coincidentally, one of the red flags for Mito is multiple organ system involvement – from the symptom list on UMDF (at the bottom of the page) ‘Think mitochondrial disease when three or more organ systems are involved’. Yeah, mito kids have a great big target painted on them and  I don’t even need to point out the ways a child with EDS would be vulnerable with all of their crazy symptoms…

The Vulnerability of Rare and Invisible Conditions

So many rare diseases are poorly understood – science is just now giving us the tools to understand and to diagnose these challenging conditions and there is precious little education about them among medical professionals. For many conditions, there are no indisputable tests to 100% confirm that the diagnosis is correct. For many people, their only option is a clinical diagnosis because testing either does not exist or is dangerously invasive or expensive or less than accurate. Justina Pelletier had a clinical diagnosis of mitio, made in part because her older sister had clear positives on the gold standard tests – in particular, a muscle biopsy. That was not enough for Boston Children’s Hospital and within hours of her arrival, they overturned Justina’s mito diagnosis and replaced it with somatoform.

My daughter’s EDS diagnosis is ‘only’ a clinical one (as are all HEDS diagnoses because the gene causing it has yet to be discovered). True, she was diagnosed by one of the foremost experts in the world… but the report officially says something to the effect of ‘symptoms consistent with the hypermobility type of EDS’. How easily could that be questioned by the wrong doctor? Frankly, it is terrifying.  I am not alone with this unsettling reality – many parents of chronically ill kids deal with this issue every day.

When the world of invisible illnesses – illnesses that one cannot see just by looking at a person – collides with the psychiatric field, there are often grave consequences. When you have a condition that is not readily seen, you are vulnerable to people dismissing your suffering and your diagnosis because of their own limitations and the limitations of medicine. A person with EDS may look fine, but is probably in pain 24/7 and they probably have at least a partial  set of the conditions that typically accompany EDS – POTS, gastroparesis, mast cell activation disorder, and so on. None of which are visible, all of which are real. And, sadly, any one of these could earn a person a diagnosis of Somatoform Disorder.

When a person with a rare, chronic, or invisible illness comes up against an all-knowing doctor  (in Justina’s case, an all-knowing neurology resident and a new psychologist) it is very, very bad news. If this collision happens at Boston Children’s Hospital, it can become a living nightmare.

In a way, Justina’s case is nothing new; it is just an extreme example of what the chronically ill live with. Anyone who lives with a chronic illness knows somebody who has been told (literally) you are crazy, it is all in your head, you are faking – if you haven’t personally experienced it.

I know of several people who have been accused of Munchausen’s By Proxy/ Medical Child Abuse or their child its counterpart, somatoform disorder, even though their EDS was well documented. I know kids who have been accused of dislocating on purpose, for attention, by the medical professionals who are supposed to be helping them. Right now on the EDNF Inspire message boards there is a thread discussing false abuse allegations in EDS and rickets and it has 179 replies. There is a facebook page “Fractured Families” where EDS families who have experienced being falsely accused of abuse can support each other while they try to get their kids back and put the pieces of their lives back together again. This is clearly a topic of deep concern and  interest for EDSers and others with rare diseases.

Yes, rare diseases are complex and challenging for doctors. Sadly, too many medical professionals, when they cannot explain a symptom, opt to ignore or trivialize it by labeling it pyschosomatic. When this happens in an place where ‘parent-ectomies’ are common and even encouraged and a young doctor is allowed to say “I don’t believe mitochondrial disease is real” unchallenged by ANYONE in the facility, the tragedy that has befallen the Pelletiers may be unavoidable.

WHY?

Now, you may be asking “Why on earth would they want to kidnap kids?” Sounds ludicrous, doesn’t it? There are so many layers to this story and it seems so utterly fantastical and, frankly, unbelievable, that we don’t want to believe it.  As Rev. Mahoney, the Pelletiers’ spokesman said at a recent press conference,“It’s easier for us to want to believe or wrap our brains around the fact that a family is mistreating their child than the alternative to that… and the alternative to that is what has happened in this case…and that is with impunity, government agencies and courts have removed a child from the loving care of their parents.”

For those outside of the chronic illness world, this all seems to be an overreaction on the part of paranoid parents, because, hey, that couldn’t happen in the US of A…right? The government could not simply steal your child away from you with no good reason…right? But for those living with chronic illness – it is very real. Real people are being destroyed. Families ripped apart. Children tortured. Lives irrevocably altered. There are agendas and power plays and egos and government overreach and money that all come into play, with disastrous consequences for the chronic illness community.

The ‘why’ is critical to fully understanding this case and I will be discussing it in my next post. The answer to ‘why’ is the missing piece to this puzzle and it isn’t pretty.

I will continue to write about this topic for the sake Justina Pelletier and Levi Stout and Elizabeth Wray  and  Eithene & Gabriel Hilliard and all of the children wrongly separated from their families, some of whom have died and others whose parents have just disappeared into anonymity after their child was taken away for good. I will write about it until Justina is safely returned to her parents’ custody and there is a Justina’s Law put in place to protect our children from this nightmare. Because it could be my child, just as easily as it is Justina and it shouldn’t happen to ANY child.

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