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?
Sweet Momma, I can't even begin to imagine your pain. The whys, what ifs have got to be unbearable at times. But your story is important, not only for your healing but for those moms that come to Share feeling they don't have a place to belong. Thank you from moms you will never meet or even know that you touched. Thank you for your courage and bravery. I'm sorry doesn't make things better, so I will leave you with I care and thank you!
Sending you lots of hugs Nikki. Telling your story is important because not every child with a birth defect gets to go home, and the other moms like you need to know that they are not alone. That the picture that is painted of courage and strength is not the only representation of birth defects. Sometimes the picture is ugly and full of pain and grief. That picture needs to be painted too, so that one day maybe we can find the answer to "why him".
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.
Privacy, Terms, and Notices
© Privacy, terms and notices