Saturday, August 20, 2011

Would I have terminated my son?




My initial visceral reaction to the recent NYTimes piece about the growing number of women who elect to reduce their twin pregnancies to a singleton was of disgust. How could you possibly choose which one? Which of my sons would I have gone without? How could I do that to his brother? How could I rob them of their twinhood? What sort of selfish person would play God like that?

Even knowing what I know now — that my life would be completely turned upside down and all my hopes and dreams for my career and what my family would look like would be shattered — I would never go back in time to terminate an "extra" baby.

In fact, I'll go so far as to say I think the people who would are completely unprepared for life as a parent — in which you have significantly less control over your life and certainly can't expect to decide who the person you nurture grows up to be.

But would I have done it back at the beginning of my pregnancy? If I somehow could have known then that one baby would have brain damage?

Yes. Absolutely. In fact, it wouldn't even have to have been that early.

When we were told at 20 weeks that we were having twins and that preterm birth was very likely, we asked the high-risk obstetrician (who was forced upon us) what sort of chances we would have of normal babies if we gave birth early. He told us that at 28-week fetuses join the "90/90 club." That is, 90 percent of babies survive and 90 percent of those who survive are normal.

That became our target date. Two months of hormone-sodden stress all focused on getting passed 28 weeks. Because, you see, after a lot of thought and discussion, my husband and I agreed that if they came before 28 weeks we would have signed their DNRs — essentially an out-of-body abortion.

We didn't want a special needs child. Let alone two. Just because medical science has advanced to keep micro-preemies alive doesn't mean we should have to shoulder the burden of them for the rest of our lives.

So it shouldn't have come as a surprise when the day before I hit 28 weeks the stress built to a fever pitch and I was forced to admit myself into the hospital with contractions and a dilated cervix. Thankfully, an infusion of epsom salts (magnesium sulfate) kept the contractions at bay and I stayed there for two weeks feeling bored and confident in my victory lap. (Ha.)

So if Malachi "had" to have a disability, I'm eternally grateful that we made it passed 28 weeks so I wouldn't have had to make a decision that would have scarred me for life and robbed me of the simply AMAZING person he is — cerebral palsy or no cerebral palsy. Of course, it would have been a major mistake to have terminated him and/or his brother. They are AWESOME.

But then my husband asked me a question that left me speechless.

If we got pregnant again — NOW — with twins, or even just one, what would we do?

Considering I'm terrified of having any more babies, I would really have to think about that one.

Pregnancy is such a weird time because everything feels hugely life-altering and yet so undefined. The baby doesn't seem real at all. It's hard to reconcile the idea that the thing inside of you will one day be a person. And not just any person, a person you will love more than you love yourself. A person who will amaze and inspire you. (And yes, a person who will harass and torment you.)

At what point is that fetus real? I don't know. I know it's a lot earlier than I used to think. But I still don't think I'm sure it starts at conception. Maybe other moms out there have had life-changing interactions with their unborn children and would disagree with me. I wouldn't really know. Because of the uncertainty and fear of preterm labor — and what we might have to do because of it — I rarely interacted with my babies in utero. I didn't stop calling them Baby A and Baby B until after 28 weeks.

But they were still real to me. I know that I still would have missed them if they were gone. I would have missed them for the rest of my life.


18 comments:

  1. Anonymous5:41 PM

    Thanks for the comment on my blog! I have only read this one post but will read more soon.
    Take care,
    Tracy
    jackspeanut.blogspot.com

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  2. The people reducing to a singleton for no other reason than they thought they couldn't handle two - especially those people who already had kids and were afraid they wouldn't have enough love - then why the hell are you even having more than one child in the first place? If you honestly think you couldn't spread your love, that having twins would take away from your older children, why have even one more? It's still taking away.

    Before we got pregnant, I'd told my husband that I wouldn't be able to terminate, even if we were told the baby had a condition that would for certain cause her to die shortly after birth. His position had always been that he *would* terminate, but since I wouldn't that was the end of the story. He's since told me that as soon as he saw the girls on the ultrasound, he knew he never would've been able to do it. Sometimes I think it's easy to say what you would do when the situation hasn't presented itself - maybe, if Malachi and Jaden had come at 27 weeks and 3 days, you and your husband would've followed through with the DNR. Or maybe you would have taken one look at them and said eff it. Or maybe they would've taken one look at you and said "eff you, we're staying regardless."

    I've somehow lost where I was going with this. Except to say that I think you're right, people think they will have far more control over their children and the people they become than they think.

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  3. I agree, Amy. I don't know if we really could have done it if we were so close.

    I also agree that people who feel like an extra child "takes away" their love are doing something wrong. Love isn't a competition.

    I recently heard a Snap Judgement on NPR in which a gay couple adopted medically fragile triplets within hours of receiving a phone call. They were subsequently taken away from them (given back to the unstable mother) and when the interviewer asked if they would take them back knowing it would explode their family into 5 children, one said: "Of course. If anything I've learned that having more children multiplies your love. It doesn't divide it."

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  4. It's such a fine line when you're talking about viability and life quality in 23-28 weekers. Your heart says "save them" your mind says "let nature take it's course" or "be merciful."

    And in some ways, it's an even finer line whether gay couples should be allowed kids. Personally, if they are upstanding people and wouldn't be touchy-feely with the kids, by all means give the kids a happy family. We all know kids aren't guaranteed a bad touch free family in heterosexual families. And forcing a child to stay with unstable parents is cruel.

    I think quite often things boil down to selfishness. Other than in instances of rape or health issues, people should stick by the decision they made when they had sex. We all know it's a 50/50 crap shoot, either you will or won't get pregnant. So, in my opinion, you're welshing on the deal by terminating any part (twin or not twin) of the pregnancy.

    You don't want a "right to life" discussion here, but of course I'm gonna say something.

    I'm of the opinion people in general should butt out and let the woman and her doctor make the decision.

    My view of the whole issue is that there wouldn't BE an issue if children were taught to respect/love themselves enough to make good decisions in the first place. Then they can grow into adults who make good decisions.

    As to providing contraceptives, kids need to know the real facts, and again, be taught how to make good decisions. Not left with the vague teaching that sex is a "sin," that just makes it more attractive!

    Off the soapbox and back to the original topic. Knowing what I know now . . . would I have signed a DNR for my 26 weeker . . . I probably still would. I wasn't offered that opportunity nearly 13 years ago. I did demand to see the doctor and make my opinion felt that if the child was seriously sick I DID NOT want him forced to live, I wanted them to take whatever was the merciful choice in his treatment.

    I wonder if that isn't what the whole world needs right now . . . to treat each other with mercy.

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  5. Well, I know that had I delivered iBean earlier than 32 weeks, we would have been in for a rough NICU ride. With my gestational hypertension starting at 16 weeks, I knew that a preemie delivery was a very real possibility. When I made it past 28 weeks, I breathed a sigh of relief. Then when I made it to 32 weeks, the neonatologist told us that the success and survival rate was essentially the same as full term babies thanks to modern medecine (provided there were no health issues with the baby such as bleeds or genetic malformations, which in our case, there weren't). So I made is to 32 weeks 5 days. She was 3 lbs 9 oz, was intubated very briefly, mostly because her vitals were depressed from my IV infusion of magnesium sulfate, and was on room air 2 hours after birth. She was on TPN for 6 days, at which point the IV could come out permanently because she was on full feeds. She started nursing at 5 days old and was discharged after 18 days - only 35 weeks 2 days gestation. She was a miracle.
    As for the pre-28 week babies and outcomes, I don't know what I would do. I would probably fight tooth and nail for their life, as I have a friend who had a 25 wk 2 day baby girl who had everything that could possibly go wrong GO WRONG. There were several times in her 92 day NICU stay that the mom was told there was nothing more they could do for her baby. Now, Shyla is almost 2 years old and has no residual problems from being born so early. She was one of those 25/25 kids - only 1 in 4 survive and, of them, only 1 in 4 are healthy. That is Shyla.

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  6. You are a brave woman - that kind of honesty is nice! My girls were full term, born without NICU, and STILL something happened that caused our disabilities. It could have happened to a singleton too. It just goes to show you - we have control over very little that happens to us, but we have complete control over what we do with it. Of course, I have mixed feelings about this article.

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  7. Faith: I'm going to put aside the whole issue about gay parenthood. Let's just say I think they aren't any more likely than heterosexual parents to be "touchy-feely."
    I agree that it comes down to selfishness but in that article they are talking about people who have undergone IVF. In my mind, that's even worse. You wanted a kid so badly that you were willing to defy nature and create one but when it's two you freak out? That to me is a risk you should have been prepared to accept, even more than just when you had sex.

    Cheezewhiz: That's really wonderful about Shyla. Statistics work both ways, don't they?

    Fer: Soooo true. We have such little control over our lives.

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  8. Yeah, I read the article AFTER I expressed myself. One day I'll learn not to do that. :o)

    I TOTALLY agree about going so far as IVF and then not wanting them all.

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  9. my comment has nothing to do w/ the article, just the awesome blurb below your "post a comment" section that i just read. HA! i like you, shasta. just really like you :)

    oh, and as a p.s., this one really has me thinking. not a good thing right before bed. we'll see if i can sleep...probably not. will have to work it thru my brain first. 'nite!

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  10. It's such an impossible decision. I am glad you have both your amazing babies and weren't actually faced with that kind of decision.

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  11. I'm preface my comment with I did not read the NYT's article.
    I appreciate your openness about your confliction over the entire topic. It is so grey: viability, special needs spectrums, & statistics. I would feel in situations like that any decision would feel overwhelming.

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  12. I have a child with Down syndrome. They didn't see it in the 20-week and we had no reason to pursue an earlier screening, so we got the news at birth. I was not a person who was in any way, shape, or form prepared to raise a child with a disability. I had a towering level of discomfort around people with disabilities.

    And yet it took only an insensitive email from a church member oblivious to her own bigotry, praying that God would "heal" my daughter's DS because "we know there is no Down syndrome in Heaven," to light me on fire with love for my child. And now that I've lived a few years with her, I realize how amazing the her chromosomal giftedness really is. How it gives her an inexplicable ability to connect with people in a way wholly unique, and life-changing for them.
    How it shifts my priorities and makes me realize how little of what we obsess over in our culture really matters. How what we call suffering is an extremely biased, presumptuous point of view.

    I think the greatest danger is that we impose our own biases and presumptions about what makes life worth living on a class of people when we really DON'T know. For most of us, people with disabilities were walled off in special ed, and there's a natural aversion to "differentness" that leads us to say "I can't do this, I don't want to raise a child, it would be kinder to spare them life altogether," when really, we're totally without a clue. Life for these people is rich and full and beautiful just the way it is. We're the ones with the skewed POV.

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  13. Kathleen: Thanks so much for sharing your story. I really couldn't have said it better myself. Those with disabilities have their own lives to lead that are just as valid as ours and shame on us for ever thinking otherwise. Have you heard of TheLoveChromosome.com? So cool. Also, a blogging buddy has a daughter with CP and a son with Down and she (and they) are awesome. You can find her at Bringing the Sunshine. There's a link in my blogroll in the sidebar.

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  14. Anonymous9:22 PM

    I don't get the gay couple part from the comments section, and them being "touchy feely."

    So it's an "even finer line about gay people being allowed kids?"

    I know the blogger didn't say this, but if anyone knows what it means to be "touchy feely" I would really like to know.

    Also what is a bad touch free family? Sorry, I have never heard anyone use those words in that way before. I'm not sure whether to be offended or not.
    However, the part about gay people being allowed kids is not a "finer line." Sorry, that is a bigoted comment, straight up. It's 2011, let's try to progress a little as a community.

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  15. Agreed. I didn't want to get into it when we had the whole abortion thing already on our plate, but yeah, let's stop equating homosexuality with deviant sexual behavior.

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  16. Anonymous10:49 AM

    What? Really. People think that because someone is gay they are more likely to be "sexual" with their child? That is sick, and not factual. It's your male family members (usually straight) who are sexually abusive. I forgot their were people who actually thought that way so I was confused by what touchy-feely was. Just think how hard it is for a gay couple, with twins, and one that is disabled. When your child is disabled, if your not super religious or see it as a "blessing" you pretty much are already "testing" the status quo. Our family brings gay, twin, disabled, and female to the table, we are in for a fight. Especially since people believe we are less than human in the first place.
    Your blog is great by the way.

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  17. This is still probably a little to real and painful this topic... My little girl is 10 weeks old tomorrow, and we found out about her condition (ACC) at 34 weeks pregnant with the Drs firstly ensuring we knew we had "options"... Infact they kept ensuring we knew these so called options that some even seemed to suggest termination despite not being able to tell us exactly how the condition will affect her.

    We had to decide, this decision probably the worst decision I will ever have to make - not for the choice I made, but the lifelong repercussions... Any day my girl is sad or in pain I will remember my decision and wonder if I was selfish to keep her, or selfless. BUT, that said everyday I am grateful that I was strong enough to keep her and feel privilaged that I have such a beautiful daughter. I know I will carry guilt if she does struggle in life, but I would have carried guilt having never given her the option of life...

    These "options" that the Drs speak of, it's not an option but a lifelong commitment whichever way one chooses. I chose a commitment to my daughters life, and in that chose a commitment to feel guilt and pain any day she may feel it along her lifespan... but I'm sure also much joy to when she experiences it! If I didn't chose this I would have had to committed to a lifelong experience of guilt and wonder.

    (If my comment is all over the place - it just shows you where my head is currently... Just still trying to deal with the diagnosis and what it will mean for her.)

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    Replies
    1. That's a beautiful and powerful story, Pieta. Thank you for sharing.

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