How Hemophilia Care Evolution Has Changed My Family Dynamics

When my son “MacDonald the Older” took over his care, I celebrated his accomplishment. “MacDonald the Younger” would not reach independence until many years after his older brother did, but reducing oversight of infusing to one child proved liberating.

Before the Younger’s independence, my wife and I still actively participated in the Sangre De Oro Chapter of the National Hemophilia Association, with me serving on the executive board of directors as vice president. Most of our extra time centered around the hemophilia community, and our closest friends were parents of those with a bleeding disorder. We grew close to those who shared our struggles. All of us spoke the language of the community: “My child had a joint bleed, and it took forever to get it under control.” “My child has an inhibitor, so having hemophilia for us is like living in the 1950s.” The beauty of being surrounded by those who identified with what we faced encouraged my family and provided a reason for our being.

Years passed and it became MacDonald the Younger’s turn to discover independence. He proudly injected his medication into his right thigh. He currently takes that medicine, Hemlibra (emicizumab-exwh), once every other week. The tiny needle currently required starkly contrasts with the thick 1-inch needles we inserted into his port-a-cath each day. His current treatment was considered science fiction when MacDonald the Older was a toddler.

Once my younger son started treating himself, I felt lost. Suddenly, in the twinkling of an eye, hemophilia ceased to be the first thing around which we based our morning routines. We no longer worry about the things we did before taking Hemlibra. However, while the product liberated us, it also knocked us off our feet. Who are we without the constant worry of joint bleeds and spontaneous bleeds that frequently occurred as a result of his inhibitor? Our future seemed uncertain.

Our hemophilia journey goes beyond the common concerns of children without a chronic condition. In addition to the regular childhood developmental milestones, we always worried about ordering medication and auxiliary necessities such as sharps disposal containers, needles, syringes, 2×2 cotton pads, and Band-Aids. We struggled with makeup work in school due to extended hospital stays while also attempting to find some sense of normalcy for MacDonald the Older and his high school experience. All of this may sound like chaos, but to us, it was a way of life.

What is my relationship to hemophilia now? What do I have to offer to the world? My purpose is gone. Don’t get me wrong, I am grateful for new ways to enhance the quality of life for my sons. It’s just that I hadn’t foreseen that letting the last boy take charge of his own healthcare decisions would uncover a feeling of loss and insecurity in me.

My wife and I continue to have active roles in the bleeding disorder community. We attend conferences and maintain relationships with friends. Perhaps we can reclaim the passions that drove us before having children. Maybe we can discover new things that bring us joy. The journey that we take includes deeper understanding regarding connections with goals that we had to give up for the sake of treatment and care for our loved ones.

We look at this time as the next chapter in our lives. My sons control their disorders. I am but a helper. They ask questions as needed, but their parents do not take the reins. We taught them well. Now the rest is up to them, though we are never too far away to help or give a word of encouragement. We always remember that treatments may come and go, but the love shared between us will never leave.

***

Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to hemophilia.