29 September 2011

Conversations :: "What caused the heart defect was ..."

Losing a child makes for some potentially strained and awkward social interactions, especially when you’re meeting people for the first time. I thought I would spend some time this week talking about what some of those conversations have been and how we’ve chosen to handle them. These posts are intended to be descriptive (my explanation of what we have chosen to say or not say in these conversations) rather than prescriptive (this isn’t me saying: “this is how you do it”). I simply want to share what these conversations are, what has worked for me, and hopefully spark some discussion around what has worked for you if you’ve been a part of conversations like these as well.

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Deep. Breath. Okay.

Before I explain what this conversation is, I have to admit up front that this one gets me to feeling like an angry tiger backed into a corner, or a boxer whose elbows are being pinned back against her will to the corner of the ring in order keep her from pummeling her opponent to death. This one makes me just plain angry, and I have little to no patience or understanding for those who feel compelled to say what they do in this regard. If it had happened just once, I probably wouldn't mention it. But it's happened at least four times now.

I'm talking about those "experts" who claim to know what caused Ewan's heart defect. The doctor who read our initial 20-week ultrasound blamed it on me not taking folic acid -- before he even thought to ask if I had been taking it before and during my pregnancy. He was shocked when I said I had been taking it, and well in advance of becoming pregnant. Someone else told me it could have been exposure to a particular processed food. Another claimed it could have been the anti-anxiety medication I took for a few months over ten years ago when I was in college. And a chiropractic physician (not the one I'm seeing now) said it was my poor spinal alignment at the time, causing poor nervous system health.

September 21, 2010 :: Ewan hangs on while he gets an echo

I hope I'm not completely off my rocker in reasoning that it's not a huge leap between 1) Someone saying to me that doing X (or not doing X) may cause congenital heart defects, and since your child was born with a heart defect, you must have done (or not done) X, and 2) Feeling accused of having caused it. These things are said by persons with little to no knowledge of my actual habits or medical history, and it has always been the case that they have no way of knowing the particulars of Ewan's case. These conversations took place primarily during my pregnancy, but also have occurred since Ewan's death.

I don't think it's a stretch to say that I have been blamed for causing my son's heart defect.

It is almost universally the case that I am too shocked at the not-so-subtle implication being made about me and my behavior to say anything in response at all. Just like anything else, I try to presume the best intentions of the person with whom I'm speaking (e.g., perhaps telling me this is meant to give me knowledge that may help me prevent a heart defect in my next pregnancy, their intent is not to accuse, etc.), but it's honestly difficult to assume the best of intentions from someone who appears to be assuming negligence on my part. Presumptions are made about what I have and have not done, and based on these presumptions, the would-be expert has the answer for how to prevent it "next time."

Next time? Why are we talking about "next time" when I'm more concerned about the child who is in my belly right now? And we already know he has a heart defect, so of what particular use is that information now?

What's ironic about these assumptions is that we actually do know from Ewan's doctors, surgeons, and a genetic counselor what caused Ewan's heart defect based on the tests that they ran. Statistically speaking, there is no known cause most of the time, but in our case, we were able to find out. If you don't remember me mentioning it, it's because I haven't -- too much was going on when we found out (the day he came out of surgery), and too much has happened since. It wasn't anything I could have prevented, even years in advance of becoming pregnant. It was not a medication, it was not a toxic exposure, it was not anything my diet, it was not a vitamin deficiency, it was not my spinal alignment, nor was it anything else we did or did not do. In other words, we had absolutely zero control over Ewan having a heart defect. That is we know for sure.

I know only too well how completely aggravating it is to have no control over this. I took the best possible care of myself, and my son still got a heart defect and died. So why this need to find an underlying reason for the random and inexplicable -- to identify a cause and relegate responsibility? Nothing on earth could have stopped this from happening. It was like winning the lottery everyone wants to lose.

I could respond with as much information to those who assign me with the responsibility of the defect. But knowing I'm talking to someone who is presuming upon my ignorance and/or negligence does not exactly induce me to be explicit with them. There is nothing I need to defend.

I don't know what else to say except, "We know with certainty that's not what it was," as firmly and as clearly as I can, and leave it at that (hands clasped calmly behind my back and not squeezed around any throats).

This one I don't have figured out to my satisfaction. It feels as though my hands are tied. I do not want to allow someone else's posture toward me to place me in a defensive position. But in not saying or doing anything more, it almost feels like I'm letting someone get away with something criminal. It is exasperating.

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Conversation time!

Fellow parents, I'm looking to you. I'm guessing I'm not alone in this. Have you had an experience similar to any of these? What did you say or do? It doesn't have to be a heart defect -- any health issue your child faced where someone else said you were responsible for having caused it somehow. In retrospect, is there anything you wish you had said or done differently at the time?

Lace up your gloves and let the discussion begin on the Team Ewan page on Facebook.