Day Six: Books

I read a lot; I always have. It’s surprising to me that I haven’t read more babyloss books, but it has never felt quite right. Before Owen was born, I considered reading Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life by Amy Kuebelbeck. It tells the story of parents who chose to carry their pregnancy to term after finding out prenatally that their son had hypoplastic left heart syndrome. I put it in my Amazon cart a few days after we got Owen’s probable HLHS diagnosis, but I couldn’t bring myself to actually go through with the purchase. Kuebelbeck and her husband chose comfort care for Gabriel, and even though Zach and I were heavily leaning toward choosing comfort measures only for Owen, I couldn’t bring myself to purchase a book in preparation. It felt like giving up. Kuebelbeck also wrote A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life is Expected to Be Brief. That book is still sitting in my Amazon cart as well.

I did read a lot of books when I was pregnant, but they were mostly mystery novels and detective stories. I read all of Gillian Flynn’s books, and even though I found them grizzly and just a little too harsh for my taste, they were a fine alternative to contemplating the choice to let my son die.

I’ve mentioned before that I sometimes feel guilty we didn’t demand every possible medical intervention for Owen. To clarify, this is not rational guilt. When I am missing him the most (and this was especially true for the early days), I would think, if we had just demanded surgery, he’d be here now. But I know that even if we had demanded surgery and he was here now, he wouldn’t have had very long with us. Objectively, I know that Owen was too severely affected to live, and forcing long-term ventilation and respiration where there were no lungs would have been painful–more painful than I could accept choosing for Owen. Still, modern medicine tells us to fix, treat, cure. We technically chose the opposite, although I don’t see it that way. To me, we did heal Owen. We chose comfort and love, and then death protected him from any pain. To me, we took on all of this grief so Owen could live peacefully.

loving and letting go

Loving and Letting Go: For parents who decided to turn away from aggressive medical intervention for their critically ill newborn

I ordered this book a few months after Owen died. It, like the others, sat in my cart on-line for weeks before I finally bought it. It was hard for me to conceive of myself as someone who turned away from medical intervention. It’s the only baby loss book I own, but I’m content that it’s the only one I need for now. Maybe someday I’ll read the others, but today I’m satisfied to belong to a group of parents who took on lots and lots of pain so their babies didn’t have to.

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6 thoughts on “Day Six: Books

  1. Oh, I might check that one out. I found Waiting for Gabriel and A Gift of TIme after Mabel died. I read them voraciously, wishing I had known of them before I gave birth. I thought I would have been able to frame my pregnancy differently- found more things to celebrate. THough if I”m totally honest, I might not have been able to accept the books while pregnant because Mabel’s diagnosis, like Owen’s was unknown. Her prognosis was poor, but death wasnt certain. Though the books made me realize that I regretted not celebrating my daighter more in her pregnancy. I had thought Iit would make me sadder, and maybe it would have. but at the time I hadnt found my resources for those carrying a baby with a poor prognosis, i felt so alone- like literally the only one to have gone through this. then finding the books shortly after she died I felt less alone. I do wonder how welcoming I would have been had I found them while pregnant

    • I am so sorry you felt so alone while you were pregnant. I was part of a pretty supportive on-line message board, but I still felt alone sometimes–especially around healthy pregnant people. We were fortunate in that the severity of Owen’s condition wasn’t really evident until the third trimester, so even though we had gone back and forth between lethal and variably lethal diagnoses throughout pregnancy, I still had enough hope to want to do maternity pics and celebration showers. Having said that, I was definitely in too much denial when I was pregnant to read those books., and I haven’t looked at the maternity pics since we received the files. I think I was lucky to have experienced bereavement in the NICU so I knew how to plan the practical side of things, BUT I didn’t really prepare myself emotionally, I don’t think.

      For what it’s worth, I read your blog while you were still pregnant, and I could tell how much loved and wanted Mabel was. I think your blog is a beautiful celebration of her life.

  2. As someone who also made the decision to stop life-saving measures for a very sick baby, I understand your guilt and your recognition that the guilt isn’t rational! To me, it was both the hardest and easiest decision to make. K and I tell ourselves – Anderson was loved every minute of his life, and especially, especially in that moment we chose to let him go rather than live a “life” in hospice care. You demonstrated your love for Owen more in the moment you knew you had to let him go than any other.

    Can you tell me more about the book? I’m assuming you read it – did you find it helpful? Would you recommend it to others?

    • I did find it helpful. It didn’t offer much in the way of statistics. It was pretty much just stories of other parents who chose to withdraw interventions and a discussion of the process of making those decisions, but that was what I needed at the time. I knew the statistics for Owen, and no book will make that part easier. What I really needed was validation, and I feel like I got that. Also, the author devotes a section to “miracle babies” who may have had similar diagnoses but lived when your baby didn’t. That part was really helpful for me. Lots of babies with EVC live, so I was kind of haunted by that–what if we had forced more intervention and Owen was a miracle baby? She breaks down the thought process there and sort of delves into why it might not be the most productive line of thinking (not least of all that miracle babies are usually just called such because they lived, but the quality of life may not be something you or I would find acceptable for our children).

      I would recommend it. Here’s a link: http://www.amazon.com/Loving-Letting-Aggressive-Intervention-Critically/dp/156123060X#customerReviews

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