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   Friday, March 02, 2007  

Accidental activism

Earlier this year, Mr. W and I recieved a plaque from the March of Dimes in appreciation for the amount of money that our family team (read: the two of us) raised for last year's WalkAmerica. We also had a letter enclosed asking if our team captain (me) would like to volunteer on the planning committee for this year's walk. Since I'm staying at home and life revolves around the lowercase (story time, trips to the library, gymboree, whatever he needs whenever he needs it), I decided that I could spare the time. In talking to the director of our regional office, she learned that we walked because we're preemie parents -- and asked if we would take on the additional responsibility of being an Ambassador Family. Of course we agreed.

At this week's meeting I was a little disappointed because all of the other committee members had been involved in planning in prior years and agreed to do all of the things they had done last year. Which left me with basically nothing to contribute at this meeting. As we were leaving, the director pulled me aside and said that she'd like for me to speak at a breakfast next week -- to share our story, to give a face to what the March of Dimes' mission is all about. Because I had said during the meeting that I would help in any way necessary, it wasn't something I could turn down even though I HATE public speaking. (Yes, I am a teacher. Yes, when I'm working I do a lot of speaking in front of crowds, but it's entirely different when it's a crowd of 8-10 year olds instead of a crowd full of adults!)

And then today my phone rang. The NICU social worker thought she remembered something in my case history and wanted to know if she was remembering correctly. I've written before that I have some serious medical issues -- all resolved at this point, but that were once incredibly life threatening. The primary issue is that I have a congenital diaphragmatic hernia (essentially, that muscle wasn't developed properly in utero such that on my first breath, all organs from the abdominal cavity were pulled through the hole in the muscle and into the chest cavity filling the space that my lungs needed to function and requiring immediate emergency surgery). Thirty years ago, in many areas (including the one my mom lived in) ultrasounds were not readily available and thus the CDH couldn't be diagnosed until birth. This is something that is now diagnosed at the "big" 20 week ultrasound.

Our social worker called because there are parents who have a diagnosed child (she didn't indicate if they were diagnosed via ultrasound or if the child had been born) who would like to speak to someone who has survived with the condition. I gave her permission to pass my contact information on to them and said that I would be willing to speak to anyone at any time who is faced with this. And then I did some research so that I would have a bit of information about the condition as it affects others -- the survival rates, the prognosis that is generally given.

And the information *isn't* good. Most of what I found revolves around a study conducted in Australia. Upon diagnosis via ultrasound, 33% of parents choose to terminate. Of the remaining pregnancies, some babies are stillborn. There isn't any information about premature babies with CDH (though one article that I read stated that surfactant therapy doesn't improve the prognosis for preemies with CDH). Full-term live births have a morbidity rate between 4o and 62%.

I knew that it was bad...life-threatening. I just somehow thought that since it's diagnosed in utero now...since NICU doctors are prepared for births that are scheduled in advance so that the child can IMMEDIATELY have surgery...I thought it would be better than, essentially, a 50/50 shot.

(As a side note, by the month that I was born in 1977, there had been 13 documented births of children with congenital diaphragmatic hernia. And only 2 of us survived.)

So now I'm trying to figure out what I'll say to that family. That I'm fine? That I'm not medicated in any way and once I was weaned from the pain meds from my surgery at birth that I never was? That I'm active -- able to work out as intensely (or more) as anyone in the gym (you know...before the baby when I had time)? That even the inability to breathe at birth didn't cause any form of brain damage -- that I was a straight A student, that I went to a highly competitive and prestigious private university, that I have a master's degree (for which I never received a grade lower than a B+)? That I have a husband and a child and a normal, typical American life?

My inclination is to tell them just that...to get them to fight with everything they have in them for their child to make it. I keep thinking about how things could have been different if my parents had known about this prior to my birth. How would their doctor have counseled them? What would he have said to them about the option of termination*? And how many of those children who are terminated could have had the same outcome that I have had?

I suppose it is only my responsibility to tell them my story; to answer any questions they have for me about my condition and to refer them back to the doctors, social workers, clergy, or whomever else for statistics and ethics and whatever else as they make decisions about what to do and expect for themselves.

*I don't think, in the US, in the state that my family lives in that termination would have been an option -- I don't think abortions are performed past the first trimester there.

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  Comments about my post, "Accidental activism":
I've been called upon to counsel people and tell my story in a number of ways. It's rarely easy, but always good.

I think you're right to tell this couple exactly what you described. If I knew there was a chance, I think I'd go forward and hope for the best, while knowing that that may not be the outcome. If the alternative is a relatively quick death (as opposed to other anomolies or disorders that don't lead to death, but rather a lifetime of braindeath or pain), I think I would take the chance. But that's just me.

You can't go wrong by speaking the truth. I hope fortune smiles on them.

Oh - and, trust me, if you can speak in front of elementary school kids, you'll find adults FAR easier.

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