Sharing Sterling to save babies....

     I am always hopeful that by sharing our story, sharing Sterling's story, people will fall in love with him and be outraged that more research and more funding for that research isn't available. Sterling died from the #1 defect in the world! And yet most people don't know very much about it. Heck, I had two little boys with CHD's and I didn't know half of what I know now.

     My other two sons have issues with their electrical in their hearts. While this can be dangerous, theirs were caught and have been monitored closely. One even took medication for his entire first year of life to help him stay "healthy". I watched them grow and was assured their issues would not interfere with them growing up or their quality of life. I was actually given the impression that I shouldn't worry. That murmurs and certain issues weren't a big deal.

     That is why, when Sterling was born and was given a clean bill of health, I let my guard down. He had signs, subtle signs that something may be wrong. But those signs could also be seen as other more "normal" baby issues. He grew. He played. He laughed and loved. I didn't know that a baby could have defects in his heart and they could go undetected. I thought he would look sick. I thought he would give us clear signs that something was wrong. I was wrong, so very wrong.

     So when Sterling stopped breathing that day. When I was asked over and over again by police and medical staff, "what happened today? Would anyone want to hurt him?" I was left thinking it was my fault. Clearly, the doctors didn't know why my son stopped breathing so it had to be my fault! While we waited nearly eight months on his autopsy results, I blamed myself. What else could it be? Clearly, I missed something. When that call came and I heard the words "your son had multiple congenital heart defects that we believe stopped his heart that day which resulted in lack of oxygen to his brain which led to his brain death", I let out a moaning, deep cry much like I heard come from me when the doctor called his time of death.

     How in the world could such a chubby, happy and seemingly healthy baby boy be so sick? Research would lead me to story after story just like ours. And I started realizing just how deceptive CHD's are. How "good" our babies look. That leads to people not realizing just how deadly they can be. That also leads to people not wanting to know. I too wish I could go back to before I knew. But I cannot. And so I will continue to share. To hope that people will read the things I write and maybe become outraged that more isn't being done. More funding for research. Better testing.

     I write, I share our story so that no other parent has to hear from the coroner about their child's congenital heart defects. I always tell people that I don't know if we had known of Sterling's defects if he would still be here. But our family and Sterling, we deserved to know that we had a monster lurking. A monster waiting to take a piece of our family forever. We deserved to know so we could have fought. So I will share our story and keep sharing our story. And if anyone out there wants to share our story or use our story, please let me know. I feel like this is all I have left to do for Sterling, that this is his legacy. Education. Research. Better testing.