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The parade of doubts

November 19, 2008

The congenital defect that led to Teddy’s death occurs in 1 out of 2,500 births, which is uncommon enough to make me feel failed by statistics, while still being far too common.  Some of these cases of CDH, like Teddy’s, are diagnosed in ultrasounds, usually well into the second trimester.  Of children born with CDH, about 50% survive.  There are different statistics (ranging from 20% to 80%), and different ways of framing those statistics, but this is the one I heard most often.

Perhaps 50% has stuck in my brain because it’s such a flip of the coin; not the worst odds in the world, but just by looking at the figure you know that someone will come down on the wrong side of those odds half of the time.  One death for every survival.  We wanted to be on the other side of that 50%, but we knew we might not be.  After week 29 of my pregnancy, we knew that we wouldn’t be able to waltz into the local hospital, excited and happy, and leave the next day with a healthy baby boy. We knew we were in for big-time grief or the long haul in a NICU.  And even knowing that, Teddy’s death was the worst kind of surprise.

“It’s not your fault,” is something we heard from every doctor we talked to.  I remind myself of that on nights when I can’t sleep, and sometimes it helps and sometimes it doesn’t, because they don’t know what causes a congenital diaphragmatic hernia.  No one does.  So there may be something I should or shouldn’t have done, should or shouldn’t have eaten, something I could have controlled or fixed if I’d known what it was.  And telling myself that, even if there was something no one knows what it is, doesn’t always help.  It seems as though it shouldn’t have taken much to end up on the right side of those odds, to have nudged us over into the happy 50%.

Teddy’s birth was hard.  I didn’t react ideally to the pitocin and the contractions were long, which is why we eventually had the c-section anyway.  If he hadn’t turned that last week, if we’d had a scheduled c-section with none of that stress of if I’d asked for a c-section at the first signs of it, would his chances have been better?  What if I had refused induction altogether and shelled out for hotel money to keep us in Portland until I went into labor on my own, giving Teddy another week or a few more days of safety to grow in my womb?  I don’t know and I’m afraid to ask.  We all did what we thought was best at the time, but what if we were wrong?

What if all that’s standing between my current sad self and that other, happier imagined me who is holding a living, squirming baby in her arms is a plane ride taken at the wrong time or drinking from a water bottle with BPA or avoiding food coloring or walking up the hill to work at the wrong time on the wrong day or asking for a c-section?

There are days like today where I feel like such a failure of a mom for losing my baby.  The voice in my head telling me, “They said it wasn’t your fault,” becomes shrill and desperate, never quite convinced.

What do you regret when you don’t know what to regret?

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6 comments

  1. I’ve thought so many times… If I could just go back to time X than I could make it better, I could change it.

    It’s enough to drive you crazy, really.

    No advice here, just know you’re not alone.


  2. Hi, your blog came to me in my google alerts.

    I just wanted to let you know that’s it’s “OK” to feel regret and wonder what you could have done, because that’s what you when you face an enormous loss.

    Sometimes, you just come up on the losing side of life’s gambles and there was nothing you, your partner, doctor, taxi cab driver or milk man could have done about it.

    I don’t know if this helps.

    -Anne


  3. Everything. Nothing. The thing is we end up running a lifetime of what-ifs in our heads. It’s a dialogue that just never seems to end. I feel enormous guilt and regret that my hypothyroidism had not been diagnosed. I feel enormous guilt that the anticardiolipin antibodies in my blood had not been detected. For all intents and purposes, my body made my son die. It is my fault he is not here, but it’s all a little late now. I did what I could at the time with what I knew. There is nothing more. Nothing less.

    But Heather is right: Its enough to cause an already grieving mind crazy.


  4. Erica – I have had ALL the same thoughts as you have about Tikva and her CDH and why and how and what if and… I so feel you.

    We were given 30% odds that Tikva would live, based on the severity of her CDH. And even then, they told us something that I have never forgotten: It was impossible to know what the quality of her life would be if she did survive. We definitely learned more about what they meant by that in her last few weeks of her short life. We learned that life attached to a ventilator, for years if not always, in an assisted living facility is not the life we imagined for our child. We learned that CDH babies have to be on ventilators for weeks, months, and that ventilators damage their already fragile lungs and airways. We learned that the damage done can cause its own ailments, and that sometimes these can be fatal.

    I don’t know if this is comforting at all, but sometimes to me it is. That it was never as black and white as living or not; as being on the right side of that 30%. In a way, Tikva was on the right side of it – she did survive, and in many ways she defied all their expectations – but she lived only a short time. So there the odds didn’t help us at all.

    I guess it all just makes me realize how insane it all is, that we attach ourselves to numbers because they give us some sense of control about something so uncontrollable. Especially since they don’t know what causes CDH, so how on earth can we feel like we have any control one way or the other?

    I wish I could make us all stop running the what-ifs through our heads and silence all the why’s and all the doubts. I’m sorry I can’t… I could really use a break from the heavy burden of responsibility I can’t help but feel for how Tikva’s story unfolded. There is a constant little piece inside of me, though, that knows I’m not responsible… that I was never in charge of Tikva’s journey, that thinking I was is my ego trying to change the unchangeable, that she came and did exactly what she needed to do, and I was here to help smooth the way. It’s hard to explain, but that helps me amid the doubts.

    Sending you lots of love, Gal


  5. Thanks, all. Some days “What could I have done?” seems to be all I can think of and it’s hard to get out from under that. It helps to hear that I’m not alone in the doubts.

    And Gal, thank you, thank you for reminding me that it’s not black and white, live or die. I knew that when we made our hard decisions, but things often seem murkier now than they did then.


  6. I’m so very sorry for your loss. I lost my son to CDH too. If you need to talk, please feel free to contact me. And please know that CHERUBS is here for you too. http://www.cdhsupport.org

    Dawn



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