I remember the first time I heard about hemophilia. I was 6 years old and my little brother was born. I had to hold him under a pillow because he was “fragile.” My little brother was a “bleeder”. All I knew was that I had to be extra careful with him.
When my brother was born, my mother learned that the generation-old family rumor about a “problem with the blood” with the boys in our family was true. Looking at our family tree, we knew many little boys did not live past toddler years, including my mom’s own brother. But no one talked about it. When my newborn brother’s routine heel stick was oozing for hours afterwards and the diagnosis came, our family secret was out.
Growing up the big sister, I treated my little brother like any sibling would. Yes, we played. Yes, we fought. Yes, we did things that we knew our parents would never approve of like roller skating, climbing trees, and being dare devils. My brother just happened to get medicine in his arm or hand a few days a week and wore padding until elementary school. I never thought we were different.
When I was 12, the realization that I too was a bleeder hit home when I had my tonsils taken out. My best friend in elementary school had hers taken out first, and she got lots of ice cream and was back in school in no time. “It was easy!” she said. But when it was my turn for a tonsillectomy, I came out of surgery and kept BLEEDING. It didn’t stop. I went back twice to the hospital and it still didn’t stop. I was scared. The doctor told my mom that it wasn’t possible “for girls to get it.” My mom fought back. She fought to get me factor so that I would stop bleeding. I now understood why my mom fought so hard to advocate for us kids in a time of fear and misunderstanding in the late 1980s. There were lots of uncomfortable questions for my young mind - Would I get sick like all other kids at hemophilia camp? Would my brother and I die? What is hemophilia? And would I give it to my kids one day?
Preferring not to focus on the hard questions, my teenage and young adult years were spent much in denial at the time about my own bleeding issues. I went off to college to study dance and then launched a dance career. All ballet dancers’ joints hurt now and then, right? Joints swell when you dance too hard, right? I hid my bleeding history because in the ballet world, if you were weak or injured, you were passed over for the next girl. And so I wasn’t a bleeder like my brother. I just had heavy periods. Girls can’t get it.
This thinking pretty much continued until I was pregnant with my first child, who happened to be a boy. I now had to face hemophilia head on. We had a smooth, unmedicated (except for my factor) delivery, and within 24 hours my son was diagnosed from cord blood testing. But I knew he had hemophilia when I took off the Band-Aid from the heel stick administered three hours prior and saw it was still oozing with blood. I just smiled, put a new Band-Aid on, and accepted that this thing called hemophilia is not a curse but a gift that was going to be in my life for a long time to come. I was given this in order to be a living example how hemophilia is not a disability, but something that you can live with and honor the lessons it teaches about being stronger person.
I went from sister to bleeder to mother. In the end I discovered that hemophilia is something that binds us together—all our fears, hopes, and dreams for our families and ourselves can be fully realized despite the fact we don’t make a particular clotting protein.
