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I was tasked by Rebbecca to write how a birth defect changed my life.
I remember with my pregnancies the book that was like my bible, What To Expect When You are Expecting. I remember at the end of the book there was a small section on all the things that could go wrong with a pregnancy. I never looked at that section. My pregnancy with C which was a "textbook" pregnancy I didn't need to look at it. I knew that everything was going to be fine. Conceited I know...but I had no reason to think otherwise.
Than my second pregnancy I miscarried at around 6 weeks. It sucked but I focused on the fact or more accurately became obsessed with just getting pregnant again. I never really let myself feel sad over the miscarriage. Now I wonder and I think. I wonder would that have been my girl? Was it the genetic thing I have been informed about with my 3rd pregnancy that caused it?
Than my 3rd and final pregnancy it started of rocky had a little spotting. Nothing like the last pregnancy but I was paranoid and called the doctor with a lot with questions those first few weeks. Got to the second trimester and started calming down. I still never looked at that last section of the book but this time it was out of worry, fear. I didn't want to know what could happen. I already knew a miscarriage could happen. I also felt something with this pregnancy. I can't put into words what just something very deep in the recesses of my brain that would sometimes get me thinking, wondering. I just wasn't settled this time with the pregnancy and enjoying it like I did when pregnant with C. Intuition? I don't know...
All I know is that my husband and I were on top of the world my sons third birthday. We had one little boy and another one the way in a few weeks. Bring on the craziness of a house full of boys I'm ready! I grew up with two brothers. All our family and friends were over celebrating with us. The one thing that always stands out in my mind from that day which by the way was our last "normal" was me saying to my mom," Things are going great I'm wondering when the other shoe is going to drop..." Well the shoe dropped the next day.
I had Scott 3 weeks early. He was considered full term since I had made it 37 weeks. When Scott was born he never cried, he barely moved( and movement for him was a twitch of a finger, a small grasp of your finger, a tiny movement of limbs), he never sucked, he never swallowed, he never gagged, he never blinked. He was like a doll. We find out that his brain did not work. Later on we found out that his body did not produce the chemicals needed for the neurotransmitters of the brain to function. Without those neurotransmitters working your brain isn't going to do much. There were two things that could have caused this genetics or a stroke in the womb. I was so sad hearing stroke. All I could think, dwell on for days was that if I was induced before he had that stroke....But as I have processed what has happened reflected back on my pregnancy and how he never moved in the womb as much as his brother. I really do think it was genetics. So if it is genetics we have a 1-4 chance of all our babies having this birth defect. Because of this we have taken ourselves off the market of having babies.
For me it has affected my life because my son is not here. He is dead. It has taken me two years to say or write that word. I could say passed away, loss. Dead sounded to harsh but that is what it is. He is dead. He is dead because my husband and I possibly carry two defective genes that can cause our child to have this birth defect.
GUILT- I carry guilt with me all the time I try not too. But my son will never have a living sibling. Never know what it is like to play with his brother, argue with him, wrestle, annoy one another. He will never have that special bond that shoulder to lean on when life kicks you down. I failed C in the fact that I can't give him a living sibling.
The what would life be like thoughts I have often...how much would Scott have been able to function on his own? Would our days have been filled with therapies? Would we have been able to care for him at home? Than more guilt for remembering Scott in this way and having those thoughts.
The feeling that you have when you know your not having any other children. It affects you mentally. Although I am only in my thirties it makes me feel so much older knowing I'm not having anymore kids. The fear every month of what if I'm pregnant? The relief when that day comes to show your not. The wondering if you had another baby would they be fine? Would they be like C? or would you go through the same thing as Scott. Or would they live but be so brain damaged they would have no quality of life? The sometimes longing of wanting to be pregnant again. The wanting to be able to hold a baby watch him or her go through the milestones. But than realizing that risk to high. I couldn't risk bringing another child in this world that could possible never have a good quality of life that could never be able to do anything. I can't put C through it again. Coming up with words to explain to a 3 year old why the baby isn't coming home. Having your son's entire 3rd year of life be him watching mommy and daddy grief, sink into depressions, constantly be sad and crying. I can't give C another year of that. and I'm not sure that another pregnancy wouldn't result in that. there are no guarantees.
I went from being ontop of the world to my world crashing down. I held my baby dying wondering is there anything I could have done to help him to make his brain work. He was perfect in every other way. I went from pure happiness to depression/sadness/anxiety. I question daily what could I have done differently to save Scott.
Loss takes so much from us, Nicki. In your case, not only losing Scott and all that comes with that, but also to lose your hope of future children, I know that must be so very difficult, as that is a huge loss.
Sending love to you,
Oh Nicki, this is such an honest, painful post. Thank you for taking on the challenge and writing this all out. I'm so, so sorry that you lost Scott and all the other potential children you might have had had this birth defect not come into your life.
So much love to you,
I'm so sorry Nicki, for all that you've lost. Thank you for sharing openly just how deeply it hurts and in so many ways how it's changed your life.
March of Dimes fights for the health of all moms and babies. We're advocating for policies to protect them. We're working to radically improve the health care they receive. We're pioneering research to find solutions. We're empowering families with the knowledge and tools to have healthier pregnancies. By uniting communities, we're building a brighter future for us all.
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