By Cazandra Campos-MacDonald
One thing I’ve learned is that right when I think I’ve got hemophilia all figured out, something comes along that blows my perception and understanding right out of the water. I’ve learned that you never know when your experience will ring true with someone else and make them feel less alone. That is one of the many reasons we should all be compelled to share our stories.
In 1996, my first son, Julian, was born and diagnosed with hemophilia. When you have a child with a bleeding disorder and know of no relevant family history, you eventually accept the diagnosis as a spontaneous mutation and move on.
After ten years of raising Julian and dealing with his hemophilia, I had a big surprise when I found out I was pregnant again! The thought that my second child might also have a bleeding disorder never crossed my mind. Julian’s diagnosis had to be the result of a spontaneous mutation…or so I thought.
Even though we had a lot of support, there was something deep down telling me that this journey was going to be different. At the time, I didn’t realize how solid my intuition was.Then the diagnosis came. After Caleb was born, I vividly remember the doctor who delivered him coming to our room and saying, “Cazandra, you and Joe (my husband) know how to do this. This baby could not be in better hands.” However, my friend was right. I was completely devastated.During my second pregnancy, a dear friend who has four children – two sons with hemophilia, a carrier daughter, and an unaffected son – pulled me aside and gently explained that I should be prepared in case my second child was also diagnosed with hemophilia. She told me that even though she knew of her family history and was prepared for it, the diagnosis of her second child rocked her to her core – even more so than her first son. I thanked her for her concern but, quite honestly, dismissed the possibility of having another child with hemophilia.
When you have more than one child with a bleeding disorder you quickly find that despite their diagnosis and severity being the same, the disorder can present very differently. With my oldest son, the hardest thing to handle was getting him to self-infuse. He is now 17,never experienced a joint bleed, only missed three days of school (for a muscle bleed), had a low titer inhibitor that was tolerized with one port, and never had a single port infection despite two and a half years of daily access. Given his diagnosis, his health has been almost too good to be true.
On the other end of the spectrum there is Caeleb, now 7. He was diagnosed with a high titer inhibitor at 11 months, is on his fourth port, has had several infections, two target joints, and more hospitalizations than I can count. He often has to use a walker or wheelchair and missed 42 days of school in the first grade. He also has an intense fear of needles and is allergic to Factor VIII.
Our sons started with the same diagnosis but their journeys have taken different paths. You would never know by looking at their medical histories that Julian and Caeleb were biological brothers. I truly felt like a newly diagnosed parent when Caeleb was born. I had 10 years of experience with hemophilia under my belt, but when inhibitors entered the picture, found that I didn’t have a clue about this disorder. Not a single clue. But it is what it is and we make the most of every single day.
My boys are on a journey and my job is to help them discover their identity, in spite of their bleeding disorder. For my oldest, hemophilia is not the center of his life and for that I am extremely thankful. For my youngest, however – at least for now – hemophilia features much more prominently. It affects everything he does from being able to play with his friends outside, to not being able to run the bases in tee ball. I know there are many things he can do, but sometimes the “can’t’s” are overwhelming.’ But the things he cando are amazing! He is a great reader, is an expert Lego builder, knows more about electronics than I ever will and loves like no one else. His smile brightens up a room and he loves making new friendsIf I could take away the bleeding disorder I would without hesitation. But our lives are what they are for a reason. My sons have amazing things in store for them and their struggles will empower them to be amazing men. I am just glad I am along for the ride. We are in this together and for that I am grateful.
“The road of life twists and turns and no two directions are ever the same. Yet our lessons come from the journey, not the destination.” Don Williams Jr.
Cazandra lives with her husband, Joe, and 17 year old son, Julian, and 7 year old son, Caeleb, in New Mexico.
*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.