an exercise in empathy

First, thanks to everyone for all your words of support following my last two posts. At 16 weeks, 4 days along. I’ve made it through 3 major goals now: into the second trimester, finished with the cerclage and onto the shots. I’ve had one of the 20 progesterone shots I will hopefully have every week until we make it to term. Even still, I’m starting to enter my super duper nervous phase, which will ramp up until 24 weeks and then begin to wind down until hopefully I reach term.

I’ve been deeply upset by an experience my doctor’s nurse shared with me the other day. She wanted to know why I’d chosen to go with a compounded version of 17-P, rather than the Makena, the KV Pharmaceuticals version. Scroll back a few posts and you can see how I feel about the company. Read this story for an update: http://www.forbes.com/sites/edsilverman/2011/12/14/going-going-gone-kv-pharma-sinks-under-its-troubles/. In all honesty, I wouldn’t choose to sacrifice my pregnancy and this baby if my concerns with KV were simply political. I’d take whatever drugs would save it. I don’t trust the company or its products and feel safer knowing that a local compounding pharmacist, who my doctor has been using for years and who she trusts over KV (something she told me after I made my feelings clear), will be mixing up the drug that I believe brought us Samuel alive and full term.

In talking about 17-P, the nurse told me that her brother-in-law and wife lost a baby girl last fall and are considering their treatment options for a subsequent pregnancy. Here’s where the conversation got loaded. I asked her what happened. She told me her sister-in-law’s cervix completely opened, her “bag was bulging” (meaning the membranes of the amniotic sac were exposed), at around 16 weeks, well before viability. She was at an earlier gestation with her baby than I was with Natan, where we’d passed into week 24 when I was hospitalized, and we made it to the end of week 25 before all hell really broke lose. The baby was not viable. I feel like that has to be repeated. The baby could not survive out of her mother’s womb. She’d also developed an infection–the biggest risk to both mother and child. Antibiotics didn’t work. Her health was at great risk, her reproductive organs were at risk, and they were too far from viability to wait it out. She also developed a leak in her amniotic sac.

She and her husband wanted this baby. Her family was so excited–she was supposed to be the first grandchild. But, they had to terminate the pregnancy. Even I can’t imagine the misery and heartbreak involved in making that decision.

I remember the moment the doctors told me I was in preterm labor very clearly. I said to them, “I want to do whatever it takes to save this baby. I know it might have severe cerebral palsy, or worse, at this stage, but I want us to try.” Later on, the doctors told me how “brave” I was being, how impressed they were at how much I seemed to understand my medical condition, the baby’s chances, how clearly I made my decisions. Honestly, that was a facade. I had no choices, but I wanted to feel in control. It wasn’t brave to say I wanted my baby to live–it was instinctual. Natan was just past the point of viability–I was lucky in a sense that there wasn’t a choice to be made, so it was easy to say “try everything.” It wasn’t easy to experience everything, certainly, but as long as there were options for saving him, I had reason to hope. 

I can’t imagine being told there’s no hope left for my very wanted child, whose heart is still beating, a heartbeat I’ve seen and heard. Natan died before my hope was gone.

Thus, I really cannot imagine what the nurse’s brother and sister-in-law went through–how they felt making the choice to follow the doctor’s recommendation and following through with it. How it felt to leave the hospital and face the real world again. 

Thus far, this story isn’t different from others I’ve heard before, from what close friends of mine have experienced. The next part, however, goes beyond the pale. The family told most people that they’d lost the baby. Somehow, however, it leaked that they’d terminated because of an infection threatening the mother’s life if the pregnancy continued. To make a sad story worse, this happened right as the fighting over the “Personhood Amendment” raged on in the fall.

The family apparently lived in a particularly conservative area of Mississippi, and attended a particularly conservative church. They’ve lost almost all of their “friends,” and were forced to change their phone numbers and shut down their Facebook pages because of harassing messages calling them “murderers” and “babykillers.” They’ve been told the mother should’ve died trying to save her a baby, that it’s clear she’s not a real mother, that God is going to punish them. The grandparents have been targeted too, and they’ve lost lifelong friends. They don’t feel like they can go out in public in their small town, and are trying to move.

I’m not trying to be sensational, and I’m well aware that many people who think they wouldn’t make a similar choice would never be so awful to another person. Yet this story shocks me and has haunted me for days. I simply cannot imagine living in and being part of such a horribly cruel and heartless community. Yet it exists, not very far away from where I live now.

My sister, when I told her about it, said to me, something like, “Some people just can’t accept that bad things happen for no reason; they just have to blame some one.” She’s right. I suppose if you have to have blame someone, and you can’t blame God, humans are another option. I choose neither. 

As medicine stands now, no person could save that couple’s baby. People, however, could have tried to comfort them, to help them heal. Instead they chose to hurt them further. That I cannot imagine.

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5 responses to “an exercise in empathy

  1. I’m getting choked up reading this. I could go on and on about this, but trying to be brief, I think many people (men and women) love to judge and blame mothers. It’s one of today’s acceptable forms of sexism. And when I say mothers, I mean women trying to become pregnant, women who are pregnant, women in labor, and women with children. When people talk about choices mothers make, they tend to be overly confident in their assessments, critical of the woman’s decision making, and just plain condescending. How dare these people assume they understand this devastating situation? If this was a male medical issue, for example, no one would claim to be an expert on the course of treatment the man should have taken.

  2. I am also horrified by such a story. I find it so hard to understand how the pro-life movement can so successfully proclaim utter nonsense as science (ie. post-abortion depression, post-abortion breast cancer risks, the miraculous ability for a woman to sacrifice her life for a baby when the whole point is that the mother needs to be in good health to carry a baby). I have wonderful, intelligent friends from my childhood (down South) who loudly proclaim these falsehoods and believe them with all their hearts. I think that there is so horrifying about abortion to these men and women that it puts blinders on them.

  3. Sadly, I’m not shocked. It’s a really scary world out there, and I feel so sorry for this family and others living in areas like that. When I was pregnant in Indiana, my ob. repeatedly (and strongly) warned us that *if* we ever considered terminating the pregnancy for *any* reason (including medical), not to discuss it with anyone in town but her. She said if it ever came to that, she’d connect us with reputable doctors out of state – that we shouldn’t even have the operation in state.
    I think your sister’s right, but I also think things are getting worse. Medical advances make it *seem* like there are more choices than there are, and as Rachel said, people have blinders on.

    • Wow, Ang. I suppose I knew Indiana is a conservative state. I like to always be shocked though, by horrible behavior, just to keep my faith in people. Thankfully you never needed her advice. I think you’re right about the changes medical advances bring. I’ve had to answer questions more than once about how it was Natan didn’t survive after the point of medical viability. Statistically possible doesn’t seem to mean much to some.

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