Talking & Thinking

Aurelia wants me to accept that losing Natan wasn’t my fault. I do, but not in the sense of it having nothing to do with me, but rather because I realize I’m just a mortal and very imperfect. I mean, my body is the the one that went into labor to early – or maybe my cervix just opened too quickly – no one has the answers there since my contractions weren’t monitored. And as Dr. K said last week it’s impossible to know for sure now which came first. So yeah, I’m not culpable, I didn’t get the help I needed. That maybe makes other people culpable, and I’m doing my best to avoid that again by finding a better practice. So I can make peace with that.

But still I try to imagine why it all went so wrong. Why do I either have an incompetent cervix or did I begin full contractions so early? Why after I went into the hospital did everything stabilize (in a bad place, granted) and then suddenly move really really fast. So fast and perilously that a C-section became impossible? And of course, why did he turn breech so that the cord would suffocate him on his way out? These are the questions that have no definite answers, that we can only troubleshoot in this next pregnancy.

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Do not read the following as having any thing to do with other conversations happening right now in blogland. These are long-standing and very personal thoughts and feelings, particular to our life, conditions, and history, and inspired only by our need, once again, to discuss what we want out of prenatal testing. I could just go ahead with everything, but my hope is to bring in as little stress as possible, and even a blood test is taxing on my body for whatever reason.

After my miscarriage, some misguided people of course thought it would be comforting to say it was for the best, because there was something wrong with the baby. That appears now to be true, that it was a random chromosomal problem. It wasn’t for the best though, it was just inevitable. I’m sure some people might feel that Natan’s death was “for the best,” because he was 14 weeks early and might have suffered a lot had he lived.

I don’t want to give birth to a baby that will suffer a miserable life. That’s for sure. I listened to the doctors every day I was in the hospital tell me about the risks of a having a micro-preemie. I explained in response that I understood very well, but if the baby was born early, I wanted them to try and save it. I saw in my chart notes that the NICU doc wrote, “Mother seems very informed of risks & able to grasp likelihood of complications and disabilities.” I might be deluded. I have a nephew with spina bifida, who is paraplegic. I’ve done what I can to prevent that, but I won’t be heartbroken if we have a child with neural tube damage.

I know that spina bifida is one of the more attractive categories of disability. It’s neither a cognitive disability nor is it particularly disfiguring – my nephew is funny, smart, exceptionally good looking (really, I’m not showing a bias, I’d post a picture if I didn’t feel that wasn’t my place) and so great to be around. He’s a poster child. Coming from an active and athletic family, however, it has been a learning process for us – to come to value different definitions of a full life. Some of my older relatives & family friends consistently want to keep hoping that there will be a “cure” in his lifetime and that he’ll walk. I wouldn’t work against that, and I contribute to the Christopher and Dana Reeve Foundation, of course, but it’s hardly the foremost hope in my mind for him. I’m much more realistic.

Is there something wrong with me that I could never bring myself to say that what I want most is a “healthy” baby? Because honestly I don’t even know what that would mean – what that includes and excludes. Of course I’m not hoping for an unhealthy child. I know this could sound like just another example of how I nitpick over language. But it’s not. I don’t think anything of other people saying they don’t care about the gender, they just want a “healthy baby.” It makes perfect sense when other people say it.

I think I’m strange in that, while I’m not wary of having a child with physical disabilities, I don’t fear cognitive or developmental disabilities either. (Of course here I’m not talking about the horrors of disorders which cause children to live short lives of horrible pain.) I’m not deluded as to what this means. I remember thinking of a little boy, L., that I know, who has severe cerebral palsy when I discussed the risks for my baby with the doctors. His mother died during childbirth. I’m much more horrified by the thought that they could have both died and left his father alone than I am by his life now. The world of disability I’ve been introduced to by my nephew’s experience is beautiful and not something I fear joining, even if I would never hope for it.

Basilbean made the best suggestion in the comments of my Arianna Huffington Post. She said, “it is impossible to be without fear…it is how we behave in spite of the fear.” The only thing I have ever really feared is that my babies wouldn’t survive. It is really the only risk I’m passionate about watching out for. It was an abstract thought before, but I know now that that can happen to me. Yet here I am, plunging forward any way. In spite of my fear. I just hope I’m not irresponsibly condemning another little soul as I go.

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13 responses to “Talking & Thinking

  1. This is a really remarkable post. I think most people who say they want a “healthy” baby haven’t really given any thought to what they mean by it. But you obviously have.

  2. Sara, I’m glad you you know that Natan’s death wasn’t your fault, I guess, I just wanted to make sure you REALLY did, because I know that I have blamed myself and God, and well, just about everyone else except the Dr.s. That said, sometimes second opinions, like the one I got from pathologist, can really help to explain why things happened, and make a plan for preventing it the next time.

    I agree with Niobe, that this is a good post, because of course, you know what healthy means. Spina Bifida, for example, has been one thing they can do in utero surgery for, and with remarkable success rates. I also know children with cerebral palsy who have made amazing progress with surgery and drug therapy and physio.

    I’m always amazed at people who are convinced that having a healthy baby at birth means that’s how it will be forever and ever. My kids were healthy at birth, but they have been diagnosed with various LD and stuttering, and my oldest has ADD. We make it through just fine. In the end, healthy may not be perfect.

    But I am glad you made a distinction between the different kinds of problems, because many chromosomally damaged babies will have severe and painful problems. So many people have unrealistic hopes & it’s painful to face that. There are fatal anomolies. And there are degrees in between the two.

  3. Aurelia, I really liked what you said actually, because starting to consider that other people besides me could have made better decisions gives me hope for next time. It gave me the courage to look for a better ob practice. I wish my second opinions could give me more answers – the pathology reports only eliminated the possibility that the baby or I had any infections at the time of birth. This, of course, doesn’t tell me about conditions before labor set in.

    So depressing….

  4. Sara- Great post. I am actually of the opinion that people should think twice about having a child if they can only envision a “healthy child.” As parents, we need to be open to whatever unique challenges our child(ren) might face. Like Aurelia said, you might think you hit the jackpot with a “healthy” child and issues can come up years down the road. There are no guarantees.

    Have you looked into any of the information put out by Dr. Jason Collins and the Pregnancy Institute? He has done considerable research into the prevention of cord accidents and stillbirth that you might find interesting. He has a list of protocol changes he believes all OB’s should make.

  5. I appreciate your thoughts and insight Sara. I don’t think there is a parent or would-be parent alive that doesn’t hope for a healthy child but that doesn’t, in my mind, lessen the value of any child one might have. I can tell you that when we were pregnant, we feared also what could go wrong when everything has to be just right. The margin of error when having babies is not that great in my opinion. I am amazed there are as many folks born allegedly healthy considering all the risks. I think many people are open to the unique challenges they will face if their child is less than healthy but may not consider the unique challenges of the child until they have to cross that bridge.

    If all we thought of were the “what ifs” and not the “Let’s try”, there probably would be a few less of us here. Yeah, there are no guarentees either way except the commitment we make to ourselves and each other that no matter what happens, we can see this through together.

  6. Dearest Sara,

    You are so thoughtful in every way about your experiences, your are so beautifully hopeful, as you should be. Even though my loss is very recent, somehow I have been able to push through the fear to declare my deep need to try again. You inspire me to keep moving through this deep, dark fear. You give me hope for the future.

    You are a remarkable strong woman.

    xo-Erin, Birdie’s Mama

  7. Sara, you’ve taught a lot of people about what it takes to be a parent with this post. Many people say they want a healthy child without knowing what it truly means or what would happen if the child is not, at birth or later.

    I have people in my family who say they could never raise a handicapped child. When various cousins (not their children) have been diagnosed with learning disabilities, they immediately start calling the kids mentally retarded. Many times these same people were commenting just months before how smart they thought these kids were.

    In my husband’s family, they’ve shunned or hidden away the people they felt were damaged goods. My mother-in-law, who is a teacher, even told me that sometimes it is better for premies to die. We were talking about one of her students, V., who is the stepdaughter of a good friend of my husband’s. V. is a wonderful kid and whose real problem was that her first years of elementary school were in a state that did not want to find out what her real learning disabilities were. However, I guess I should not have been surprised because my mother-in-law gave up on my husband when he was diagnosed with epilepsy at age six.

  8. Some of those why questions have no answers, but I am sure you know that.

    Thank you for writing so thoughtfully about what “healthy child” means. It’s a tough one for me to think through, and I don’t think I really have. What I want for my living children (I hope we will end up with a plural of these) is to have the type of relationship that I have with my sister, and it is clear to me that there are certain kinds of issues that would make that impossible. However, I don’t really know what that would mean to me if I was ever faced with a reality of having a child disabled in some way, except that there would be another thing to mourn.

  9. Anonymous, what horrible stories. My family of course highly values standard definitions of “intelligence” too and I listen to story after story about how smart various children in the family are. It’s one thing to mourn when something happens and a child is disabled, but just unimaginably cruel to give up on the child. It’s also sick to throw around “retarded” with such clear condescension, or be so condemnatory of learning disabilities. If my parents had accepted my first grade teacher’s assessment of my poor motor skills, life would have been very different and much more difficult for me. I was lucky though that my parents are teachers and my dad is a special needs specialist.

    Some families might accept their children’s challenges, but for me that’s only the first necessary step. Embracing them is most important (ugh that sounds prescriptive of me but I couldn’t think of a different brief way to say it). My sister and her husband are a good example.

    When I think about having a “healthy” child, I also think about the future, twenty years from now when he or she approaches adulthood. About the possible consequences of parents who won’t embrace and accept diverse personalities and abilities in their children. I think of a girl I knew who killed herself at 20, and even not being a member of her household, I knew enough to imagine the role her father had played in her self hatred. And I vowed to myself, when I was pregnant last time, that in her honor too, I would love whatever child I was given, and look to its experience rather than mine when building expectations for its life.

  10. Sara- I re-read this post and wanted to add that I don’t believe you, or anyone else, condemned Natan’s soul. We don’t have that power. It is my belief that Natan’s beautiful soul lives on and on, and is the furthest thing from condemned.

  11. Oh gosh, Lori! I didn’t mean it like that. I wrote that meaning that I hope I’m not bringing another little person into this world just to die so early.

    I think Natan lives on too, but I too flippantly wrote “soul” because I think of it as neshama, the Hebrew word.

  12. I was pretty sure that was how you meant it, but I hated to think of you holding yourself responsible for something that could never be, and never was.

    I feel Natan’s soul just by reading your words. I am certain his special spark lives in you and through you. I don’t mean that as hollow comfort, I mean that as a sincere belief.

  13. I know. I just want the baby out of me, one way or another, alive. At this point alive would be a miracle. Healthy would be a miracle. Am I worthy of a miracle or two?

    There seem to be so many of them running around, often with their parents clueless to the danger they’ve bypassed. Let’s hope for such luck.

    I don’t think losing our babies was for “the best.” It feels like “the worst.” People just don’t know what else to say.

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