Caring Bridge

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While puttering around on the internet, I found a Caring Bridge journal of a family with two children with health problems: one with spina bifida and complications similar to my daughter.

This first hand account has opened my eyes.  He is not even in high school yet and has already had 37 surgeries. 37. And he still lives in serious, significant pain. He has his good days, but it seems as if they are minimal. He attends school, but for right now, he can only handle three hours a day. In the past, he was home schooled for (obvious) medical reasons.

Reading through the entries (over 800 of them!), I realized that spina bifida was way more complicated and painful than I had thought. Hearing how this family copes with his illness has shocked me with just how consuming spina bifida can really be.

It was also reassuring to see a realistic portrayal of the illness – I can easily find stories about happy infants and “miracle babies” who have fully-functioning adult lives, but I know that those are stories to give people hope.

So I started poking around a little more. I read another blog about a little girl whose mother had to quit work because the daughter could only go to school three days a week, and the nurse/caretaker quit. I understand now why so many parents have to quit their job, or only work part-time.

I read about another baby who died after only nine days during her second surgery. The mother was not a candidate for prenatal surgery, so immediately after birth, she had a surgery to repair the spine, and this second surgery was for a shunt. The baby didn’t make it.

I read about another family with seven biological kids, several with autism and one with spina bifida. They also adopted two children with Down Syndrome. They decided to have fundraisers on their webpage to help them pay for medical care.

I read about babies with the best case scenarios, and cried when they met milestones and faced setbacks. It’s not as if I think all babies with spina bifida should have been terminated. But even with these best case scenarios, they all seemed to spend way too much time emergency rooms and recovery rooms.

My husband sat next to me last night, and we skimmed over these webpages and more. And as horrible as it sounds, we found all these stories to be confirmation that we made the decision that was best for our child, for our family.

There is also a part of anger that I feel with these parents for being so selfish. The one mother who lost her newborn after the shunt surgery said that her daughter was only here for nine beautiful days. Beautiful? I just can’t help think that while the baby was beautiful, her time here was not beautiful. It was full of surgeries and medication and pain management. Why?

I try not to judge, but it makes me angry. I’m sure just as angry as I make them. It’s hard to look at the other side of the coin and see where you COULD have been had you just made a different choice. I think that you *have* to get angry at the other choice in order to convince yourself that you made the right choice. When you think YOU have made the compassionate choice, of course the alternatives are cruel and selfish.

I know that for me, the best gift I could have given to my daughter was prevention. I don’t understand how anti-choice advocates scream about fetuses feeling pain during an abortion, but don’t seem to give a damn about the pain that infants feel, the pain that children feel, the pain that the families feel.

There is no easy choice and I might never fully agree with the alternatives that were offered to me, but I will always be thankful that I was given the choice to protect my child.

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4 thoughts on “Caring Bridge

  1. This post was so helpful, made me feel I am not abnormal. I too TFMR a child with SB. I also have felt anger for people that allowed their child to suffer. It actually happened last Sunday in church. They showed a video that was asking us to donate money for a special needs school in our area. The children had profound disabilities. It was heartbreaking, but then made me angry that people chose life.

    I know I’ve said it before but your writing is beautiful, and I thank you for your honesty.
    Amy

    • Thanks. I think that’s why I’ve kept it anonymous so that I can be honest. I also have a friend who has a really honest blog about his struggle with depression and mental illness. I’m so proud of him for his blog, and it has inspired me. I’m not going to be embarrassed about my infertility or my termination.

      I get nervous when I post like this (the Caring Bridge post), because I don’t want to offend those who have decided to continue their pregnancies, or those who have SB. And I don’t want the people who have posted those realistic blogs to make their pages private, but they really did help me come up with a realistic view of what we’d be facing.

  2. I know this post is old but I had to leave a comment. Next week, I will be TFMR for SB. Hydro, Chiari II, heterotopia. I’ve been devastated and going back and forth because it seems that all I can find are blogs and posts of miracle babies who look so normal with semi-normal lives and I wonder “what if that is my baby and I’m giving up on him?” This post helped me so much know that there’s another side that you have to dig deeper to find and helps me feel so much better about our decision. Thank you.

    • I am so sorry. I sometimes used to see it as “giving up,” too. But I felt like it was just too risky, like I was gambling. And that never felt right. I wasn’t the one who would have to suffer. I didn’t make that decision for ME. It’s hard for people to understand sometimes.

      I’m not sure if you’ve read other posts of mine on the blog, but one of my rainbow twins had a congenital brain defect – he’s missing his corpus callosum. But we felt his chances of having a high quality were much, much higher than his sister’s. I only mention this because it confirmed the idea to me that we aren’t looking for “perfect” babies – those don’t exist. We do it to prevent suffering, to protect them. We make the best decisions for our children with the information that we have available.

      Please, try and be gentle with yourself for the next few months. I know it’s easier said than done. I wish I had gone to therapy earlier than I had. And try not to look at calenders if you can help it.

      If you go to the Baby Center TFMR page, just be careful. The trolls have been out in full force lately. I think when I went through my TFMR, the leader must have been in jail. No exaggeration.

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