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My beautiful perfect baby was born on June 5 at a little over 6lbs. He was a beautiful baby but he didn't cry when he was born and was immediately rushed to the bassinet to get assistance from the nurses. My baby was born without any of the primitive reflexes needed to survive: sucking, gagging, and swallowing. He could barely move he acted like someone would in a coma. After a few days of wondering what was happening it was determined that my son was born without a working brain. His brain was not damaged it just didn't work. My husband explains it best when he says it was a computer without the software. Test results determined that his body did not produce enough of the chemicals needed for the neurotransmitters of the brain to work. I had a perfect shell of a baby who had no way to live and function. It was devastating to learn this news and to learn that medical Science is not advanced enough to help my baby. There was nothing they could do and he passed away at 2 weeks old.
We were devastated and didn't know how this could have happened. My oldest son was born perfectly normal. There are two possible reasons why my son did not have a working brain. The first one is that he could have had a stroke in the womb. Shock, that can happen? I researched it online and find yes it can. But my gut tells me that wasn't the case. The second possibility was genetics. That 1:4 odds of any of our children being born with this. Which means Scott was the unlucky one and my oldest son beat the odds. It all has to do with genes and that every person has so many broken genes. It's a matter of finding a partner that has the same broken gene as you. Basically I can't win the lottery but the love of my life can have the same broken gene that I carry inside me and cause all our future kids to be at risk. That is just too scary of thought and so we have made the heartbreaking decision to not have any more children. The life we envisioned of at least two kids bring us joy, love, and making us crazy at times completely gone. We cannot go through the heartache that we went through again or have to face telling our living son again that he has a sibling never coming home because they were too broken. It's too scary and I can honestly say I'm not brave enough to face that again. So my oldest son will grow up without any living siblings and that breaks my heart. I come from a big family and brothers who I can count on no matter what ( I know because they proved it to me when Scott passed) and my son will never know that.
We had no clue that anything was wrong during my pregnancy the only concern being that he was quite big and probably had been born at least 9lbs if he went to 40 weeks. We even had a sonogram 3 days before he was born to get an idea of how big he was. Everything on that sonogram looked perfect and nothing indicated a problem or concern. Scott was born 4 days after that appointment at 37 weeks after I had stopped feeling fetal movement.
The shock when he was born and being told there was something wrong and then told there was no fixing it. The heartache in why us? The guilt as a mother wondering is there something I could have done differently to prevent this? The question why which we will always live with. Our lives got turned upside down a year ago just because one thing went wrong when my son was forming in the womb and because of this we have been learning to live our new normal ever since.
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.
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.
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.
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