Had I been the Matthew my mother was expecting to give birth to, my life would have been astronomically different.
I was born right around the time the first factor concentrates to treat hemophilia were available for home use. Had I been born a male rather than a female, I probably would have been diagnosed with mild hemophilia at a much younger age. I suspect that factor would have been used for a “sprained” ankle or the bloody stubbed toes I experienced throughout my childhood. Given the time period, I would have almost certainly been exposed to factor that was contaminated with hepatitis or HIV. I have some guilt over that – was I spared merely because I was born a girl and the prevailing thought at the time was that females don’t have hemophilia? Why not me instead of the many wonderful people I’ve met in this community?
Since we have no family history and it appears that I am a spontaneous mutation, I didn’t grow up thinking much about the three H’s (hemophilia, hepatitis or HIV). My knowledge about each has come from within this community over the last ten years, and frankly, I have a lot more to learn. I thank my lucky stars everyday for safer treatments and I recognize and honor those fallen blood brothers and sisters who were co-infected. My son, and I, would not have access to safe products if not for the sacrifices over 10,000 families had to make.
Sometimes I see a disconnect between the younger generation with hemophilia and those who lived through the bleeding disorder community’s darkest days. How many of us moms of younger kids really know about that history and the challenges our fellow moms faced? Do we even ask about the days of fighting for Ricky Ray legislation? What have we learned from moms of the older generation, and more importantly, how are we supporting and loving those moms today?
December 1st is dedicated to raising awareness and fighting against the spread of HIV/AIDS. For every mom that is out there raising a child with a bleeding disorder today, there are as many moms who lost a child due to contaminated blood products. Jeanne White Ginder, Louise Ray and far too many more mothers were warriors for their sons; that much has not changed in hemophilia care over the last thirty years – hemophilia moms are fierce advocates for their children. But the moms of thirty years ago fought more than just bleeds — they fought ignorance and fear, an unknown pathogen and had to make a horrifying choice of whether to continue exposure to the products that were supposed to help their children. We need to embrace and remember our entire bleeding disorders community that was impacted by HIV and AIDS. We can honor them and keep their memories alive by continuing as a community to raise awareness and advocate.
Sonji lives with her husband, Nathan, and three children Nora (11), Thomas, (10), & Natalie (7) in Colorado.
*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.