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Because my son died I sometimes need to remind myself he died because of a birth defect. I get so wrapped up in my grief of him not being here I forget that there is a medical reason why. When I was first was asked to write about my son's birth defect I was thinking why me? There are so many amazing moms on Share who do so much to help their children be the best they can be. My son he never left the hospital and so I have no clue what it is like to raise a child with a birth defect. When I think about Scott and what life would be like I paint myself the Disney version of it...that vision of two little boys running around this house. A boy whose brain works like it should. But when I let myself really think about Scott and what he really was like I know that I wouldn't be living the Disney version life. Scott would have needed a lot. A lot of medical care, a lot of therapies. We would have been fortunate if he ever was able to sit up or even eat on his own.
Scott's birth defect was so severe that he never left the hospital. He had no primitive reflexes you know those important ones needed for survival like gagging, and swallowing. I watched a doctor one day stick a metal light down my son's thrown throat without any reaction from him at all. It was equivalent to a child playing doctor with a doll. He did not gag, cry, move in the slightest.
Scott's birth defect affected his brain. The neurotransmitters did not work. It was determined that his body did not make a suffiecient amount of the chemicals needed for them to work. There was nothing any doctor could do. There was no cure, no medication he could have taken for his body to make more of the chemical. So we just watched our baby for two weeks lie in the NICU so very still, lifeless really. Never making a sound. His second day with us he moved his leg tiny bit. and when I say tiny I'm talking had to be watching closely to see it. How excited I was he was getting better I believed. The other thing that gave me hope was he would grasp mine and his father's finger. You would stick your finger in his palm and he had just enough brain function to grab hold of it. When your baby is not able to move or make sounds. That one little action means so much. To this day I cannot let my oldest son or any child hold just a finger. That was only for Scott do. One other thing gave me hope lots of hope and fed my denial of what was really happening to Scott. That was when he opened his eyes. He was few days old and he decided to show us his eyes. I knew then that this must be a sign of things to come...
But as I said his birth defect was not something his body could live with. Our only option was to let him leave us. The "day" the day of the big meeting with doctors. Sitting around a conference table with some of the best doctors in their area of study and they all go around one by one saying the same thing. There is nothing they can do. There is no cure. There is no name or conclusive results on how or why this happened. One after another and another saying this. Sitting there dumbfounded, overwhelmed. A million questions needing to be ask yet all you can do is sit there and cry and try really hard not to totally lose it. and the biggest question of all is, "Why?" Why us? Why him? What did we do wrong?
Thank you for sharing Scott with us, Nicki.
So many questions. So few answers. It is so hard to accept that.
Hugs to you!
Nicki, I am so sorry that Scott died. I am brought to tears imagining you holding his sweet fingers on yours. It is truly heartbreaking. It is scary how many things can change with birth and how many things that can affect how our little ones will live or die. Thank you for sharing your story, it means so much.
Thank you for sharing Nicki. "Why??!!" is a question that will always be in my heart, even when my mind tells me that it will never be answered.
Love and Hugs
Thank you for sharing this side of your story. I cannot imagine how difficult that must have been in the meeting with all the doctors to hear them say that. It's moving that what most people don't think twice about, the finger grasp can mean so much and bring so many memories about Scott to you. Every day I also have the "Why" question run through my head. It's hard since there is never a concrete answer. Thinking of you.
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