The Mutant Mom’s Perspective

The Mutant Mom’s Perspective

This article was written by Heidi Hart and was published in Factor Nine News, the Coalition of Hemophilia B’s Spring 2016 newsletter. For more information, please visit www.hemob.org

I am a Montana ranch girl. Like any ranch kid, at an early age I learned to ride the worst of horses and work harder than the crew. I was very competitive in sports including rodeo, varsity basketball, and track. In Montana, we work hard so we can play hard!

I have had many injuries over the years. I broke my leg in 5th grade, resulting in bleeding, bruising and edema so perplexing that doctors had to remove and replace the full length cast three times. At 17, I had my wisdom teeth removed that resulted in bleeding and bruising, which quickly became life-threatening. My period would last weeks and no one believed that to be true. My own mother told me I was exaggerating. In college, I tore my knee while snowboarding. A simple ligament tear caused my leg to swell and bleed continually for over a month. When the bleeding stopped and the bilirubin began to break down, my leg was a cascade of color. The doctor commented he had never seen anything like it. Over the years, I tried to communicate with doctors about my bruising and bleeding. I was always told that I have a light Irish complexion, which causes bruises to show easier.

My first child was delivered by natural childbirth, although there wasn’t anything natural about it. My child’s birth caused bruising all over my body, almost down to my ankles. Our nine-pound boy began showing classic signs of hemophilia immediately upon circumcision. He bled profusely for a day, was re-stitched and then oozed blood over the following week. Over the next six months, we learned to pick our baby up by his bottom rather than using our fingers because we discovered each finger left a bruise. Just before his first birthday and after several weeks of tests and waiting, we were told he had Christmas disease.

There is no way to convey how traumatic and awful it was to be told that my child has severe hemophilia and that it came from me. I am female. I have hemophilia. I bleed. I have learned from my child’s disorder and he has learned from mine. Three years after my son’s diagnosis, I was bucked off a horse and seriously hurt. The doctor stated that I had a bleeding spleen and damaged internal organs. I was able to use the same factor that was tested on my son to stop my bleeding. Knowing I have hemophilia helped save my life. Being female with a bleeding disorder is very discouraging. The challenges come straight from the nonbelievers that argue women are only carriers or maybe just symptomatic carriers. Nevertheless, I have suffered miscarriages that were emotionally painful. Professionals told me miscarriages aren’t caused by hemophilia in women because females are only carriers. Doctors, nurses, insurance companies, pharmacists, technicians, and even many in the hemophilia community have argued about this topic. I can honestly say I have had more bleeds than my youngest child with severe hemophilia. As a female with hemophilia, I hope to educate more people about the disorder to pave a better path for newly diagnosed girls.

With two more sons diagnosed with severe hemophilia added to our family, we all continue to work hard every day on the family ranch; we also ski, hunt, ride horses, and compete in sports like track, football, rodeo and wrestle. Yes, read that again to make sure you read it right! All four of us “bleeders” live a modern hemophilia lifestyle that involves all of those activities. As I said earlier, “In Montana we work hard, so we can play hard!”