Monday, July 21, 2008


Are you "out?" To everyone or a select few? And which -- or how much of your -- story do you tell?

This is the question Tash recently asked at Glow in the Woods regarding what portion of the story of our baby loss we share with the real world. For anyone who ended a pregnancy early for medical reasons, this is one of the core, lingering conundrums. You think about it hard from day one. Actually, given the nature of medical termination, you usually think about it before day one. The lead up to a second-trimester termination generally includes at least one or two days of prep, plus many tortuous phone calls with doctors and hospital or clinic staff to set up appointments. And the question gets into your head early on and clings: What in God's name can I tell people about all of this later?

Two and a half years since my termination, I still grapple with the concept of "out." I personally count four tiers of knowing my story in the real world:

Tier One: The most trusted. These people know everything about my baby's diagnosis, what went into my decision to terminate, as well as all the crazy woe that came later on. Plus, they know the horrible strain all of this put on my heart, body, psyche, and marriage.

Tier Two: The mostly trusted. These people know about the termination and probably also heard that my uterus ruptured later, but don't necessarily realize the connection between those events, or that I can't have kids anymore. Not every detail and no major emotional baggage has been shared, but I trusted these individuals enough to tell them the basic framework of the whole complicated story.

Tier Three: The suspect. Either I don't know these people well enough to gauge their philosophical stance on abortion, or I know for certain they are antichoice. I may not be close to these folks, but they are still entrenched enough in my life to require some explanation as to why I suddenly wasn't wearing maternity clothing anymore, or why my subsequent baby came so early. For them, I created an artfully edited version of the story that isn't false, but allows people to incorrectly assume that my loss was a stillbirth or miscarriage.

Tier Four: The blissfully ignorant. These are mostly people I've met since Little A's birth who have no idea of my pregnancy woes. It's not a secret, but it just hasn't come up, and I haven't volunteered it.


In the early days after my loss, Tier 3 was the group that caused me the most tension and sadness. No matter how you lose a baby, you feel flayed and exquisitely sensitive to how others perceive what happened in the aftermath. People routinely say things that they think will help but inadvertently hurt. This problem magnifies significantly if you terminate. Because in addition to the kind-hearted blunderers, there are also the shunners and the snubbers. These are the people who feel that the manner of your loss negates all rights to condolences. In fact, some people feel that a termination requires insults and condemnation. Which is bad enough on any ordinary day, but downright impossible to contemplate in the wake of your shaky new grief.

So, everyone who terminates has a Tier 3. What varies is how many people get put there, and for how long.

Now, my Tier 3 is likely very tiny compared to many other women. That's because here in the Bay Area the vast majority of people are prochoice. There isn't much risk in being open with my story. The most push back I get is on this blog. And when the occasional anonymous wing nut stops by to comment, I hold the power to delete, which really takes a lot of sting out the random trolls. So my situation is much easier than someone in Topeka or in Oklahoma City. There a woman may very likely have a friend or relative call her a baby killer to her face after a medical termination. And there just isn't any magic button in real life that can erase that.

Yet even in my "safer" locale, the specter of snubbers and shunners falls over me every time I consider telling my story. I have to really think about what the long-term implications of talking with some one could be before I open my mouth. It's always a gamble, the revelation.

And as much as I try to keep it at the personal level when I talk about my baby and my decision, inevitably it's also more than that. It's where the personal, political, and religious intersect. For always, whether I like it or not.


Ann said...

I was fortunate enough not to really experience Tier 3. In my opinion, it is because our diagnosis was so cut-and-dry. Not only would Zach never live, but even if he survived birth, he would never last more than a few hours. Even the most conservative among our acquaintances reconciled themselves with the abortion by saying, "Well, but he would never have lived anyway."

From my outside perspective, it seems like Trisomy 18 would be slightly more complicated. While the baby couldn't live, he could possibly last a few days or more. That's where judgment sets in. I'm so sorry you had to deal with that.

I would have to say that I'm completely "out" -- although I don't talk much about the medical termination anymore simply because it's complicated. I will say, however, that sometimes it feels kind of weird saying we "lost our son" at 20 weeks. It makes it sound like I went into preterm labor or something, and I feel this intense need for people to know the truth. Of course, earlier in this pregnancy I was very clear about the fact that this baby has kidneys and the other didn't, but I think there are still plenty of people who don't fully understand that we made the DECISION to end the pregnancy. I think many people in my life tend to gloss over that detail because it's uncomfortable.

Julia said...

I am sorry there is any Tier 3 people in your life at all. It pisses me off rather a lot when someone presumes to judge people for the most heart-wrenching decision of their lives, and, worse, to do it out loud. Especially the wing nut trolls who don't even have the decency to leave their names.
I am really sorry.

alice said...

Thanks for putting it into words. I still avoid tier 3 people so much that I am always under an assumed name.

Anonymous said...

I'm not out at all. I think maybe 4 people know the full story, besides the professionals who were our lifeline. And 2 of those 4 are Tier 2.

My whole world - my family, my friends, my blog - are Tier 3. I think a lot about coming clean, but I'm not ready to take that plunge. Why? Because we terminated for Trisomy 21. The one where maybe everything is reasonably ok, or maybe it'll be catastrophically bad for all concerned (especially the child) but no one can tell you where you'll be on that spectrum, and every book, blog, person, resource available gushes about how cute kids with Downs syndrome can be and how meaningful it all is and how god never gives you anything you can't handle. I have never found one blog in the entire blogosphere where the termination was for Downs, and as much as I'd like to be that resource for others in my situation, I can't. I just can't. So we'll hide out in places like A HeartBreaking Choice and that's it for us. Even though the statistics say that 90% of women who receive this news decide to terminate. We're hidden in the shadows.

I cried so many times why couldn't it have been 13 or 18? That makes it clearcut and ok. 21 is verging on making a monstrous decision. And in many eyes not just verging but IS making a monstrous decision.

I feel this is my burden to carry, not others. So tier 3 or 4 keeps it on me, and doesn't require anyone else's permission or judgment. I wish it wasn't so. I wish it was different.

Wabi said...

(((Anonymous))) -- Of all the poor prenatal diagnoses out there, I believe T21 is absolutely the most agonizing to receive because of the sheer unpredictability of its severity, the longevity of survival, and how both those factors require so much from parents and other family members for decades upon decades. If that weren't enough, you've also got some people in the DS parent community who viciously attack you. No wonder the vast majority of people who terminate for 21 don't blog or talk about it IRL. I am so sorry you have to deal with so much.

As for the ease of my decision compared to yours ... in society I definitely get a freer pass than you because of the terminal nature of T18. No question about it. But, know that *I* don't consider myself different from you. A large number of the factors that went into my decision are exactly the same as the ones that went into yours.

Aurelia said...

Oh Wabi, I ditto everything you have said to Anonymous, and everything in this post. Trisomy 21 is no different than 18 and fuck anyone who tries to judge a mom for doing what she thinks is right for herself and her family.

I know a lot of people who are Tier 3, including some people in our family. They worry me because I don't know what will happen if they ever find out.

And then there are my kids, who are simply too young to get it, and may really freak if they ever find out. How on earth do we tell our kids?

Wabi said...

Aurelia, it seems to me that beyond understanding the basics of sex, kids also must be sophisticated enough to understand the concept of tragedy before they can grasp the implications of this kind of story. If a child understands that sometimes people get dealt a terrible hand with no good choices at all, yet still must play on ... Well, that's sort of the essence of what my tx was: The least horrible of several crappy choices.

I wouldn't want the story of my tx to be the first example of tragedy that my kids grapple with, of course. That would be awful. But life being what it is, by the time junior high rolls around, most kids get the whole terrible-things-happen-to-good-people conundrum at a basic level. So then the story would have proper context, and hopefully not completely overwhelm them.

When it happens, I'm sure it will be a very serious discussion. But it will give the girls a much better idea of who I am. And it will give them a better idea of the full spectrum of things a real grown up may be called on to deal with, too.

Maybe it's strange, but I'm not worried about the girls judging me harshly. First, at a basic level, kids are so incredibly loyal to their parents. If they see us hurting or sad, they tend to reach out, not push back. Second, I am trying my best to teach the girls compassion and empathy for others. So I guess I just have faith that even if I only do a half-assed job at that, the girls will still feel for me and know I had honorable intentions in what I did.

Anonymous said...

Thank you for your response.

I hope I didn't offend you, or Aurelia, with my quick reference to my desire, in the thick of it, that it had been 13 or 18 instead. I meant to write that in a way to convey the irony - how stupid to wish your unborn child has a terminal condition. I know, of course, it wasn't easy for any of us. The least horrible of several crappy choices is exactly right.

Aurelia said...

Yeah, we kind of told the story of Matthew to the kids already with all the details except for the part where we terminated. We just told them he was born too early, due to the trisomy.

And they have handled it well, so maybe I don't have to worry, but I know that someday this will be quite the conversation.

(Anon-no worries!)

Rosepetal said...

I often say "he had a chromosomal problem and a heart defect." But I am generally out about the fact that it was a termina.tion. I always add the part about the heart defect.

Anon - I also te.rminated for T21 - and the associated heart defect made it clearer for me at the time. I haven't blogged about it much. I found it very distressing indeed. I will never know if it was the "right" thing to do or not, but then I don't think there is a "right" answer.

But feel free to stop by my blog.

Anonymous said...

For us, we've only told 7 people the details: our parents, one sibling and her spouse, and our pastor. The only reason we told the sister is that she hasn't had kids yet and she now has a higher chance of having a kid with our defect.

Maybe there's not a difference, but we feared people judging us because we didn't terminate for a fatal or chromosomal problem. Those get more of a pass, so to speak (not that I'm down-playing the difficulty or pain of your decisions and experiences, hell no). But our baby had spina bifida, of the kind where she would never have walked, never had any continence, would have had surgery after surgery after surgery on her brain, her spine, her legs. She had hydrocephalus when we terminated, which only would have gotten worse.

But it's _just_ a birth defect, that's what most people would think. But the problem with spina bifida is that it comes with all these other problems - like osteoperosis, scoliosis, club feet, pressure sores, possible brain damage that causes problems breathing not to mention learning disabilities, and the list goes on.

At the time, our oldest child was 13 months old, still a baby. He has some developmental delays. He hadn't been diagnosed with the delays, but I knew something was off. And he required so much care that I couldn't imagine just chucking him into the arms of babysitters or relatives, while we spent weeks and weeks in the NICU with our other baby. His delays were diagnosed at the time our 2nd baby was due - would we have even paid any attention to his problems, since they weren't life-threatening? Would we have gotten him the therapists and special schooling he needs?

But yeah, 99% of the people who know we lost a pregnancy are tier 3. We couldn't stand people telling us how happy the kids with spina bifida are. Yeah, the kids are happy, they're kids. But what about when they're teenagers? What fresh hell would that be, since our child would have KNOWN she was different and would have been treated differently? Tweens and teens are impossibly cruel to the kids who are different. What about her as a young adult, possibly never leaving home, never getting a job? What about her siblings, what about us? How happy would we have been?

Maybe I'm justifying, I do regret making the decision out of fear and not clear thought, but I still think it would have been hell.