So scared I had to write about it.

I don’t know what most parents fear. The big health related things. I just don’t know how to relate.

What if my child can’t breathe, and needs a machine or a tube? What if my child can’t walk and needs a wheelchair? or can’t talk and can’t tell me what they need? What if my child spends months in the hospital and will never be like all the other kids?

What if he’s different than all the other kids?

I don’t fear any of those things anymore. Doesn’t mean I’m all the way over them, but there’s no sense in fearing what is right in front of you.

Just gotta deal with it.

What I do fear that every parent fears is having my child taken away from me. To be told that I can’t be near him. Worse than just the being taken, being taken by people who presume to do it under the guise of knowing what’s better for him than I do, than his mother does.

*****

It took me three days to read the article. {part 1 which is linked below seems open to read for now, but part 2 is hiding behind the Globe’s pay wall. I’ll block quote some of the choice bits} Not because of length but it hit too close to home. I couldn’t handle it all in one chunk. I was reading about a family, a few families, going through something that crosses my mind far more than occasionally. Please give it a read. I’ll wait for you here.

A medical collision with a child in the middle

Justina has a metabolic disease. Or does she? Her parents and Children’s Hospital deadlocked, she was placed in state custody

The first 12 paragraphs sent shivers down my spine and tears to my eyes. This is not a new fear for me. I have thought about scenarios like this for 5 years. Of the doctor who thinks he knows better. Of the resident just out of medical school wielding the POWER OF THE TEXTBOOK in their zealous pursuit of recognition from the attending doc, with my child as the apple. Of being railroaded because the stress and exhaustion of this life or another hospital stay, leave us a medical-record documented reputation of being “difficult parents”. Of the assumption that Liam’s inability to verbalize any pain or discomfort means he cannot communicate it, to us.

*****

I already know that many of you will send emails or comments that my fear is irrational and that something like this could never happen to us. That it’s apparent how much we care for Liam and no one could misunderstand our intentions. But things like this happen to families exactly like us. They happen far more often than I wanted to know, and even more terrifying, they happen so often so very close to our home.

Doctors disagree all the time over the diagnosis and treatment of patients, but Justina’s story reveals a new and remarkably contentious frontier in pediatric medicine. A difference of opinion among doctors at separate Boston hospitals escalated with stunning speed. Just a few days after Justina had arrived at Children’s on Sunday, Feb. 10, doctors were urging state child-protection officials to take emergency custody of the girl from her parents so that Justina would remain safe and get the care the hospital’s team recommended.

These cases are rare, but not as rare as one might think. In just the last 18 months, Children’s — which given its reputation attracts many of the toughest cases from across the Northeast — has been involved in at least five cases where a disputed medical diagnosis led to parents either losing custody or being threatened with that extreme measure. Similar custody fights have occurred on occasion at other pediatric hospitals around the country.

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.”

Typically in these cases, the child had been diagnosed elsewhere with one of several relatively new disorders that are complex, poorly understood, and controversial.

Let’s all just waft past the infuriating, and insulting little tidbit about the industry’s pet name for this little maneuver to the sheer number of instances at this one institution about 45 minutes to our north. A hospital in which Liam has been admitted and put under anesthesia; at least 5 in the last 18 months. At least 5 families ripped apart by the very same people they ran to seeking help for their child. It honestly makes me hesitant to bring Liam there ever again.

****

In Massachusetts, the Department of Children and Families investigates all child abuse and neglect complaints and is supposed to be a neutral referee assessing the charges against the parents. Many parents and their advocates complain, however, that the state agency, because of its lack of in-house medical expertise and its longstanding ties with Children’s, is overly deferential to the renowned Harvard teaching hospital.

And there it is. “Lack of in-house medical expertise”. Liam has seen tens of seasoned specialists, to say nothing of the dozens of residents and interns who have swooped in and out of his hospital rooms, and only two had ever treated a patient with Miller-Dieker syndrome before. Yet many (far too many) thought they knew better than us about what was best for his care when they read a few journal articles and their chromosonal translocation textbook. What are the chances that the Massachusetts Department of Children and Families is going to believe us instead of any jerk in a Children’s labcoat?

*****

The child’s medical record usually contained references to the parents being highly stressed and difficult to handle. And when the parents in most of these cases rejected the suggestion by doctors that the child’s problems were more psychiatric than physical, that sparked the medical team’s concern, paving the way for the call to the state child-protection agency.

And here is where I laugh through my tears. Highly stressed and difficult to handle. you read that right. I’m beginning to wonder how many times I am referred to this way in Liam’s chart.

But it’s the second part that gets me. Liam has spent 5 years building a treatment plan with, as I’ve said, many doctors. Should I, or Karin, or Liam be punished for listening to and believing the diagnosis from the few doctors we have built up a level of trust with. These parents are being vilified for having the audacity to question doctors who have had just days of interacting with this patient. Days instead of years, and since the parents are not instantly convinced that ALL OTHER DOCTORS YOU HAVE SEEN BEFORE ARE WRONG it apparently can be cause to remove children from their families.

WE ARE BOSTON CHILDREN”S AND WE HAVE SPOKEN!

uh-huh.

*****

As tensions with Justina’s parents were rising, Newton reached out to Korson at Tufts, [the diagnosing physician who had cared for Justina] though not for his views on Justina’s medical care [emphasis added by me -eric]. Her call was primarily to tell Korson that Children’s had begun investigating the Pelletiers for possible medical child abuse. The only other contact with Korson had come Monday, when a Children’s neurology resident called him for a quick summary of his treatment of Justina.

Although inherent in these cases is the suggestion that doctors like Korson were giving care that a child shouldn’t be getting, Newton, like many in her field, generally saw the physicians as innocent victims who were misled by remarkably persistent and deceptive parents — almost always mothers.

If there’s one thing I’ve noticed about all of the special needs parents and families I interact with, it is how many of them are deceptive and misleading. I guess it’s just become the stereotype now.

And if you do follow the advice of all those bad doctors you saw before you came here to Children’s? It’s not their fault, they were all probably just hoodwinked by you Mom. More cause to take your kids away.

I’m making jokes and getting sarcastic now. It’s the only way I’ve been able to write this piece.

I’m trying to hide my anger.

Because behind all that anger is the fear.

****

I realize that the families in the article have different diagnosis and that a big chunk of it focuses on one diagnosis in particular, if the hospital can railroad over a family where the 16-year-old patient is even able to demand a lawyer (a demand that the article implies went unfulfilled) what chance does Liam have without Karin or myself at his bedside?

****

Let me be clear that I am not denying that there are cases of “medical child abuse” out there. When Doctors see red flags of this, even in all of the cases outlined in the article; even in our own case, it should be investigated by social workers and appropriate personnel. What I find most horrifying and hard to accept is that a.) in less than three days and b.) based on the recommendation of a Dr. barely 8 months out of medical school and c.) without the consultation of Justina’s primary care physician or specialists, Boston Children’s had the power to have her parents stripped of their rights. If, as in Justina’s case, a judge needs to hold a hearing to allow me to even visit Liam in the hospital, all based on the say-so of a doctor who does not know him, I am going to be facing far worse legal troubles. Like, the charges for when I punch the poor orderly, intern, or security guard tasked with forcibly removing me from Liam’s bedside.

*****

I’ve worked hard this year to position myself in a place to try to change my career sometime soon into the field of patient advocacy. My work with the Women & Infant’s Hospital Patient and Family Centered Care Advisory Council has shown me that it is what I was meant to do. Now this article has shown me that I need to tweak my focus a bit. This is what I need to be fighting against, and in 2014 I plan on figuring out how to try to accomplish that. But it doesn’t make any of this any easier.

There’s no way for me to tie this one into a nice little conclusion for you. This post doesn’t have a happy ending and writing about my fear didn’t magically make it all go away. I’ll probably always be afraid of this and perhaps I’m overreacting but I’m going to stay vigilant against this happening anyway because the alternative still keeps me up at night.

And I’m betting it always will.

7 comments

  1. As a “difficult” parent, I have had the same thoughts many times over the last nineteen years. I hold an image in my mind — and have done so for as long as I can remember — of me, running, with Sophie under my arm (first a baby, then a toddler, then young girl, teenager, young woman, still under my arm), running away, to China.

    What also comes to mind after reading your post is the two camps of people who react to yet another story of a woman/mother killing herself and her child with severe disabilities. There are always those who are profoundly judgmental, angry, they “could never do that, would never do that, there are doctors who would have helped, etc. etc.” and then there are those who nod their heads, who might not ever “do that” but who understand deeply.

    I think it’s appropriate to feel terrified, by the way — and I’m grateful that you wrote this post and more grateful that you’re actually working toward being an important voice in the hospital setting.

  2. It’s utterly horrifying, and as you say there are no nice platitudes to offer. The notes that the parents appear “stressed out” would be laughable if the whole thing wasn’t so terrifying. I hate that parents like you and Karin and Elizabeth must live with this fear on top of already impossibly challenging circumstances. I’m glad you wrote about this to bring this issue to light, and I deeply admire your decision to work in patient advocacy. You guys are incredible.

  3. Eric, I don’t think your fears are unjustified at all. I’m currently dealing with a new wrinkle in Bennett’s care, it got so bad that at his new school, public school Kindergarten, they called me and A) began to question the medications he was on and my reasoning for having him stop taking one of those medications, B) questioned my choice of psychiatric care because he was an adult psychiatrist and not a child psychiatrist not knowing anything about the 3+ years of difficulty Bennett has had with child psychiatrists in this area, C) recommended an in-patient treatment facility for Bennett to better manage his care while he goes through what appears to be a fairly difficult withdrawal from a medication, even though while he is at home in a controlled environment I can now manage many of his more aggressive symptoms just fine.

    In essence? Questioning every parenting and caring decision I was making regarding Bennett, and then suggesting Bennett be moved to half-days instead of full days for the time being. Something I do not legally have to agree to. All this without the school even having done a single functional behavioral analysis of any kind by anyone.

    So yeah…I get fear. Because there are nimrods EVERYWHERE who think they know better than YOU do after having been around your kid for 5 minutes and who are probably less read about his conditions than you are, despite their so-called expertise.

    1. Ken, first I have owed you a long email for so long know, I started writing a reply to your comment and realized it might end up being longer than the original post so that will be on its way tonight.
      Second. That situation at the school sounds downright horrifying and I am so sorry that on top of everything else you now have to deal with that.

      Third, and we’ll talk about this more, you have to be feeling pretty confident about your birds for this Sunday. At this point I think I’m better at my online correspondence than the pats are at getting into the end zone late in games.

      1. I wouldn’t be so sure. These games are always tight. I’m looking forward to it. I’m furious that they moved it out of the evening slot. With playoff implications for both teams and the budding rivalry that has developed, I don’t get the decision by NBC at all.

        As for the rest, no apologies are necessary. I have a set of pants that still sit here un-mailed. So c’mon…shit happens.

  4. Assume “The Fight” will happen. Prepare your “War Chest” with all of the legal tools you can muster; so that WHEN it happens you three can march into battle with your Army under your control for your protection.

    The Allopaths have spent years and millions assembling their army for their purposes. They may say that those purposes are the same as yours; but your experiences have made it clear that they are not the same.

    Learn the early warning signs that an Allopath is thinking about action and be prepared to divert their actions without their knowledge.

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