Learning how to infuse factor gave my family freedom, part 2

Second in a series. Read part one.

Both of my sons were diagnosed with severe hemophilia A a few days after they were born. But that’s where their similarities end.

As I shared last week, things went smoothly after we switched to a more flexible way of caring for my oldest son, Julian. But disease management was much more difficult with my youngest son, Caeleb. His care was challenging and often left us feeling hopeless. When I talk to families who are new to hemophilia, I want to offer hope that challenges can be managed, so I’m careful about sharing Caeleb’s story because I don’t want to scare them.

Unlike Julian, Caeleb had almost every complication known to man. He developed a high-titer inhibitor and could not be treated with factor VIII until his titer decreased.

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Caeleb screamed from the very beginning when we tried to access his port-a-cath. Unlike Julian, Caeleb had difficulty accepting a 1.5-inch needle being inserted into a vein. On several occasions in the hospital, five nurses had to hold him down.

And the older Caeleb got, the worse his fear of needles grew.

A sense of hopelessness fell over the MacDonald house, as we felt powerless to help our son as we grappled with day-to-day infusions. I felt like a failure as a parent because I sometimes missed the port, and had to try again as he screamed. I felt defeated and useless, knowing that not having his clotting factor product could be life-threatening.

When Caeleb’s inhibitor was at last reduced to a low titer, we discovered another problem that had been lingering in the background: Caeleb was allergic to factor VIII, the medication he needed to help his blood clot. We continued treatment with NovoSeven (eptacog alfa [activated]), a bypassing agent, and while we did have some success with the alternative product, it didn’t resolve Caeleb’s internal bleeding episodes quickly. We often found ourselves in the hospital for many days.

Things get better, little by little

Our path to freedom came at a most unexpected time. Caeleb went into the hospital for another bleed that took a long time to stop. Luckily, a hematologist we knew and trusted came into the room. He suggested we build a healthcare road map for our son. The map would include information we provided, such as when Caeleb let us know an internal bleed had started.

We talked and journaled information about his usual routine, his psycho-social status, and other information. In response, the medical team documented clinical and other pertinent details about Caeleb’s health. After we both worked together, we found a good formula that worked. This strategy was the beginning of what we came to know as living free.

Throughout this process, Caeleb’s fear of needles didn’t let up. But one day, I had an idea that turned out to be a game-changer. I suggested to Caeleb that he make a fist and then raise his thumb when he felt ready. This simple, visual cue gave him control and helped him focus on his own comfort.

This became a game for us, one we kept playing until the day Caeleb looked at me and said, “Dad, you don’t have to wait for me anymore. My thumb is up all the time.” He never had a problem infusing again. I now recommend this approach to other families, as it empowers children and reduces their anxiety.

We entered a season of freedom we had never known. More freedom came when our hematologist at our hemophilia treatment center suggested that we try a new medication called Hemlibra (emicizumab-kxwh), a subcutaneous injection just under the skin that lasts for several weeks. Caeleb began treating himself immediately without any assistance from us.

Seeing him take control of his care made us proud and hopeful, knowing he could gain independence and a better quality of life. Caeleb required a completely different process than Julian, but it opened new possibilities for him.

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, and are intended to spark discussion about issues pertaining to hemophilia.