My initial thought is “NEVER!” But when you have more than one child with the same bleeding disorder (and severity), you see the differences. Sometimes one brother’s hemophilia is easier to manage than the other’s.
It doesn’t make either one more or less important because the bottom line is, they both have a severe bleeding disorder. A condition they will live with the rest of their lives.
I don’t want to make light of anyone’s journey with a bleeding disorder. It is real for each person, difficult and demanding in its own way.
If I had to use one word to describe hemophilia for my oldest son, “Lance,” it would be easy. For my little “Christian,” heartbreaking.
Lance had his first bleed (soft tissue in his right hand) at 6 months of age, several bruises, a low titer inhibitor that we immediately began immune tolerance the day his port was placed. His port lasted for five years with not one infection and he sat completely still during the access of his port, every day for 2 1/2 years of immune tolerance. He had a very difficult time transitioning from port to peripheral, but has never had a joint bleed. Just one pretty major thigh bleed 3 years ago and an appendectomy.
In the grand scheme of it all, his hemophilia has been easy to manage (if only he would infuse M-W-F without me nagging him to do it). The only reason I can say that is because of the experiences I have had over the past 5 years with my little son.
Does it take away the reality of hemophilia for my Lance? Absolutely not. Sometimes I worry about him more than Christian simply because I think he is pretty complacent with his disorder. My husband and I are as well. When treatment has gone so well, bleeds avoided and prophylaxis a reality in his life, we almost forget that he does have hemophilia.
It’s one extreme to the other.
