Friday, March 25, 2011

Any Fetal Surgery Baby Loss Moms out there? Spina Bifida?

Call me a pessimist or a worry wart, it is probably the truth. I was worried and stressed trying to get pregnant, then worried about my baby having cataracts and needing surgery after he was born-it runs in my family, and then felt I needed to have the prescreens done when pregnant for the fear of something wrong. Obviously I had a reason to worry when it was found out he had Spina Bifida but I tried to be optimistic for like the first time ever and then the worst happened nonetheless.
So how now do I try to want to ever be optimistic again. I think I am probably driving my Ob Dr. nuts. I have called them on an average of once a week since I have been home and also talked to my Perinatologist a few times in San Fran-it hasn't even been 3 months yet. A lot of it has to do with the fact that right after surgery I couldn't even think right to ask questions and also was so depressed from losing Liam I forgot half of what I was told. I have called my Ob Dr. 3 times this week and even went in yesterday to get looked at. I had a few hard falls hiking the other day, and then had very sharp stabbing pains through the right side of my incision area the days following. My Dr. had to inform, yet again, that my uterus is just fine and the only way I can hurt it is by getting pregnant too soon. She also said that the pain is probably caused by my bowel and other things finally falling into place and the fall just got them there sooner. Apparently in surgery things can get stuck together easily-sorry if this is TMI. Not completely understanding, but I'll take her word that I'm okay-for now. When will I just learn to settle down and just to take it day to day and nothing I can do now till I even start trying again.

Another thing that has been really on my mind is how I see so many people write on their blogs how they have found people that they can fully relate to with there baby loss situations. I am so grateful to have met so many people to share this baby loss journey with-you all mean so much to me, but sometimes wish I could find someone that has gone through more of what I have. Maybe I need to look harder but what are the chances of finding another blm who has had fetal surgery and lost there baby. I have read some blogs by other moms who had the fetal surgery for Myelomeningocele for the study, but they are all the lucky ones who still have there babies with them. I believe there were 2 moms that lost there babies quite a few weeks after having the fetal surgery and I think a few that also lost there babies that were in the postnatal group. Wish some how I could find a way to connect with them, what are the chances they would even have blogs?


  1. I'm sorry that you can't find anyone who has gone through what you guys have experienced. I'm hoping someway you'll be connected with other Mommy's like you. In the meantime, remember that I'm here listening, and even though I can't really relate.. I'm always there for support!
    Taking it day by day sounds like the best approach, and hopefully the time will go quickly for you, so you guys can start trying for your rainbow!
    And thanks for all of the support on my blog! It means the world to me, I love seeing that you've been reading my crazy ramblings!!

  2. Thanks Sherri, I love reading your ramblings and love that you read so many of mine also. I am so thankful to have found such supportive people.

  3. I hope you don't mind.. but I extended your question to my blog.. in hopes of finding someone who may know someone.
    If you want me to remove my post just say the word!

  4. I don't mind at all, that is so thoughtful of you to do!

  5. Hi Becky. Your situation seems quite unique so I'm sure it would be very therapeutic to find someone in a similar situation. I hope you find the person you're looking for. :)

    I think the thing to remember is while we may not all share the same story/situation, we do share the loss of our babies, the loss of the dreams we had for them, and are all trying to find our place in this world without our babies. I'm here too, and although I can't say I've experienced the specific kind of loss you have, I definitely understand the pain which comes from it.

    Good luck in your search.


  6. Hi Becky-
    I am your newest follower. I found your blog through Laken's mommy- Melissa. I am a fellow babyloss mommy and I know all the feelings you are going through even though my loss was different. I am here for you!

    Sending hugs your way!

  7. Will definitely help find someone in a similar situation to you to share your journey with... thank you for all your support on my blog xoxo

  8. My story is not the same- my uterus ruptured and my baby had to be delivered to save my life. But I did have a big surgery, not your typical c-section. Feel free to contact me if you want to talk.

  9. Wow you have inspired me to contact my OB doc more. I have been too scared to call them because they are pretty distant and kind of un-friendly sometimes. I normally just wait til my appointments but I think I'm gonna call tomorrow. I have questions too!

  10. Becky, I am that mom -- David's mom. I posted on a comment you wrote on Facebook a couple of weeks back. I don't/may not be able to have another baby, but I lost my son to Spina Bifida following fetal surgery also in October of last year. You are the only other mom I have found who has ever lost a baby following fetal surgery for Spina Bifida. I found this blog because I was looking for some support on people who lost a baby after fetal surgery... and there is none. It's the worst feeling in the world, and there is no getting past it. If you ever need another mom to bounce things off of, please feel free. Several of the comments you've made in recent posts have really hit home, and I completely agree with your feelings, having thought I would be the only one to experience them. Thank you for putting them into words. Take care.


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