My husband, Alan, and I often get asked, “How did you raise a child with hemophilia who is attempting to climb the highest mountain on every continent?” Most of the time we shake our heads and answer, “We have no idea.”
Alan and I have two sons. Our oldest, Andy, does not have hemophilia, and Chris has severe factor IX hemophilia. Before we had kids, I knew I was a carrier and there was a chance my sons might have hemophilia. I had two uncles with it – one I never met, as he died before I was born, and one I only met a few times. Genetic testing was not available back then. All I knew about hemophilia was what I learned in high school science class and read about in encyclopedias. Doctors couldn’t tell me much, and there was no Internet.
About a week after Chris was born we got the phone call that his lab tests came back positive for severe factor IX hemophilia. Needless to say we were devastated and terrified! I remember holding this little baby and sobbing. What did this diagnosis mean? What were we going to do? What kind of life would he have?
We were referred to the HTC in Denver, only 30 minutes from our home. They were able to explain this disorder to us, but that made us even more terrified. We had a two-year-old son at home and knew perfectly well how active little boys could be. How were we going to keep this little boy safe? Could he grow up and run and play like his brother Andy? I never dreamed at that time he would be able to lead a “normal” life. However, when Chris was two months old someone said to me, “Oh he is so cute. Too bad he is handicapped.” I remember going ballistic and saying to them, “He is not handicapped! He has a bleeding disorder, and he will be just fine!”
Most people have heard the saying, “It takes a village to raise a child.” At the time, I don’t think we really realized we had that village. Looking back, we have been extremely fortunate to have an amazing support group. Our family is here in Denver, the HTC is practically in our backyard, and their staff has been like part of our family. Our pediatrician was wonderful. The staffs at Chris’s schools were great, his baseball coaches understood, and the people at his college were amazing. Alan and I did not raise Chris by ourselves. We relied on so many people, but part of what we asked of everyone was not to treat Chris any differently than you would anyone else. We would say, “Yes he has hemophilia, but he is still a kid, let him be one. We will deal with it.”
Raising children is not easy, whether they have hemophilia or not. We shed many tears over the years with both boys. With Chris there were more health challenges, of course. Watching him in pain with bleeds was hard, we struggled a lot with home infusions, (to this day Chris hates needles and infusing), I blamed myself that I passed hemophilia on to him, and we worried about health insurance. Despite all of the challenges and struggles, I’m not sure that Alan or I would have changed a thing. We don’t have all the answers, and we’ve certainly made mistakes along the way, but my hope is that by sharing our experiences we can help make things little easier for others Chris has grown into an amazing young man, and hemophilia is only a part of who he is. We couldn’t be more proud of him.
Cathy lives in Colorado with her husband, Alan, and has two adult sons, Andy and Chris. Chris has severe factor IX and is attempting to summit the highest mountains on all seven continents.
*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