Living my new normal

Birth defect awareness and how it changed our family

  • This is such a heartbreaking post.  Though most of us know your story, Scott's story, seeing it written out just brings tears to my eyes.

    Those odds, the chances of things like this happening, are incredible and yet, here you are, mourning Scott, missing him, grieving the family you thought you were going to have.

    My daughter's syndrome happens in one of 50,000 births, again pretty good odds that it won't happen and here I am.

    Here we are, grieving what might have been, what should have been and finding meaning in what actually is.

    So much love to you and your family.


  • It's a wonder to me that the human race survives as all with so many of us facing the unanswered question of how did this happen? I'm so sorry that the odds were against Scott and your family. It's hard to face a future life so very different from that which we anticipated. I hope you can find your peace somehow.


  • It is so hard to not be in control of your body and what goes on when you are carrying a baby. I often question why all my babies were born early, why one baby died and why one has cerebral palsy. Everything was out of my control but when I  see it that way I can't blame myself for what went wrong. Scott will always be apart of your families life and your son will always be a big brother. I understand right now you may not want to think about more children but sometimes things happen and it is out of our control.



  • Thank you so much for this post. While I too know Scott's story it is really emotional for me to read as well. I can certainly understand the uncertainty you must feel. It is really a very selfless decision to not have any more children, I see it as you protecting C in the most incredibly way, protecting him from more pain and unanswered questions. You are an amazing mother and I am so glad that you found Share, even though I wish you didn't need to.



  • Oh Nicole,

    My heart breaks for you. I did not know the story of your pregnancy with Scott. I didn't realize that you had no idea he'd be going to the NICU, or that you expected no problems.

    Hearing a statistic as a number is completely different than being the person that lives it. I am sorry that Scott was the 1 in 4, it is not fair.

    Huge hugs,


  • It amazes me, especially now after having had a loss also due to a birth defect, how with so much that can go wrong, so many times things go right.  We never think that we will be the ones who have something go wrong...but it happens, and it is heart breaking, to say the least.  

    I can imagine how very difficult it is to let your dream of having more children go.  Another loss.  

    Lots of love,


  • This is so heart breaking. I am so sorry. I cried as I read this.

    My 2 year old daughter has a congenital heart defect. She was not supposed to live past 1 years old, she beat the odds. I also got pregnant as a teenager and my baby had stopped growing and moving in the womb. I know how it feels to lose a baby. It feels nice to feel like I am not the only one who lost a baby.