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Evil Genetics Counselor
posted by Mom on October 28, 2005

I am so angry right now.

When we left the amnio, they gave us a manila envelope from the evil genetics counselor. Just today I found the energy to open it.

In it was a brochure, "Your baby has a problem...." with with some basic info. Fair enough. But then there was a brochure about congential heart defects - FROM 1993. The section on HLHS is outdated and states that the outlook for babies with this is poor "unless a heart transplant can be performed" No mention of the Norwood procedure. Nothing about the surgical options they encourage instead of a transplant. And absolutely nothing about how, in the past two years, the outlook has gotten increasingly better - anywhere from 60-80% survival rates (like this article). It was put together by the National Society of Genetic Counselors. Nothing, nothing in this packet from the American Heart Association.

But it gets better.

There was a book called, "A Time to Decide, A Time to Heal" - and the whole book is about terminating and dealing with that grief. Even the few pages in it about continuing the pregnancy is a story about a couple that made it to term and lost their baby 33 days later. What the hell?!?

Don't get me wrong - I understand monkey's in a bad spot. I know he's got a tough condition, things are going to be scary and uncertain. But for chrissakes, would it have been so hard to find POSITIVE stuff about the recent advancements in technology that are making it possible for these kids to live a fairly normal life? Why does everything have to be so damned NEGATIVE?

You know, maybe this is good. All my anger about this can be directed at her and her young, naive attempts at giving us information. I swear, she's been determined from the start to have us end this pregnancy - from the statement that it "looks like he's got Down's Syndrome" (which he doesn't) to her remark that she's yet to see a woman who had a positive amnio for DS keep the baby to this whole big book about how to deal with making the choice to terminate.

My god. If nothing else, it's pushing me to be positive JUST TO SPITE HER. I'm not a vicious, mean person by nature at all, but I wanted to rub those non-DS results in her face, and I can't wait to have a nice long chat with her about sensitivity and bedside manner WITH MY THREE YEAR OLD SON sitting next to me.

We'll show her, Samson.

Sorry. I'm just really pissed off.

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