Does life ever make sense? Do we really know the answers to why things actually happen? Losing my daughter, Sydney, nine days shy of her second birthday due to SUDC (Sudden Unexplained Death in a Child), pretty much means there is no answer to why. But my family decided to welcome another child into the world, our “Rainbow Baby,” Maddox.Â Fast forward six months to the frequent, unexplained bruising, and we were back to asking why this was happening? It wasn’t long before Maddox was diagnosed with sever hemophilia A.
The medical professionals asked, “Are you a carrier? You must be a carrier? Do you have a bleeding disorder? Someone in your family MUST have hemophilia?” Well, of course someone has to be a carrier and of course it must be me, because why else would my “rainbow baby” be diagnosed with a bleeding disorder!
I mean a 30% chance of a genetic mutation is pretty rare. How could I personally be faced with something else so challenging for my family? I found myself thinking, “Wasn’t it enough to lose a child, and then I’m faced with this medically challenging disorder!?”
After Maddox got his port placed at 10 months old I knew it was time to get the blood work tested to see if I was a carrier. The waiting game of four months went by, and I secretly was hoping that, maybe just maybe I was a carrier, because it would make “perfect sense.”
But then I got word, “Mrs. Craven, you are not a carrier. It was a mutation.” I don’t know why I psyched myself up thinking I might have been a carrier. In the end does it really matter? Will I love him any differently? Of course not.
I now have a child that has hemophilia, and have a new family of supporters that are going to love me and make sure I am all right. Maddox now is a new mutation of hemophilia, but I am not really worrying about the future. My main focus as his mother is to continue to focus on his safety, and to make sure that he continues to strive and succeed the best way he can.
Carrier status or not, I’m a Hemo Mom and continue to be strong for my Maddox and the hemophilia community.
Heather lives in Massachusetts with her husband, Shane, and her young sons, Logan and Maddox.
*Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.