When your child’s necessary treatment results in medical trauma
My sons' fear of needles made every infusion a challenge
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If I could change one thing about my parenting, I would have learned to manage my temper during my sons’ factor infusions. Julian and Caeleb are 10 years apart, but both live with hemophilia A and developed a fear of needles around age 6. My wife and I tried everything we could think of, yet each attempt unfolded much the same way: As I prepared the line, our son squirmed and did whatever he could to avoid the needle.
My frustration grew out of fear: What if I couldn’t find a vein and administer my son’s medicine? My wife held him still while I searched for a vein in his hands, feet, arms, or wherever I could find one. Once I located a vein, he stopped moving and let me finish the infusion. Afterward, I encouraged him and thanked him for sitting still.
While I tried to put on a brave face for my boys, I felt like a part of me was dying. As soon as we finished, I began beating myself up emotionally: “How could my anger get the best of me? My boys deserved better care than what I gave them. I inflicted emotional harm. I don’t deserve to be a father.” I shared these thoughts with my wife, along with the feeling that I had failed.
In those moments after each infusion, I attended to my son’s needs, hugged him, and assured him that I loved him. Once he left, I sat in silence, trying to collect myself and move past what had happened. I worried that my reactions might cause lasting trauma. A therapist reminded me during one conversation that I had done the best I could for my family. I appreciated her reassurance, but I still struggled with the aftershocks of those experiences.
Treatment couldn’t wait
Even when an infusion was traumatic, treatment couldn’t wait for a more convenient time. Internal bleeding episodes pause for no one. The factor medication we infused had a short half-life, so we had to follow the prescribed dosing schedule and then prepare for the next infusion. If I could have postponed it, I would have. Knowing my sons experienced terrible trauma related to their treatment, I worried they might look back and think, “Man, my dad made my life miserable.”
Most of the time, we infused every other day. When one of our sons had a breakthrough bleed, we used a port-a-cath for easier vein access. But that did not eliminate the fear. Caeleb, our youngest son, still struggled with the large needle needed to reach the bottom of the port beneath his skin. We often felt defeated by the emotional toll these infusions took on all of us.
Julian’s turning point
My sons handled their fear of needles in different ways. For my oldest son, Julian, the turning point came when he held out his hand for an infusion. As I prepared to find a vein, I thought, “Wouldn’t it be nice if he simply stayed still?” To my surprise, he did not move a muscle. The infusion went smoothly.
As we cleaned up, I asked Julian why he had remained still. He said, “Dad, I am in second grade, and second graders do not cry when they get infused.” I smiled and told him that he did a fantastic job. Then I noticed something unexpected: The horrible sense of dread that usually followed an infusion was absent. That absence caught me off guard, as though my body had prepared for failure and didn’t know how to respond when everything went well.
A thumbs-up from Caeleb
Caeleb and I found a different way through his fear of needles. Before an infusion one day, I told him that I would not insert the large needle used to access his port-a-cath until he let me know he was ready. “I know that you will be ready to infuse when I see your thumb stand straight and tall,” I said.
Gradually, Caeleb’s thumb began to rise. When he held it straight up, I knew he was ready. Once he began sitting still, he no longer struggled with subsequent infusions. That small gesture didn’t erase the difficult moments that came before it; I still carried their aftershocks. But treatment became something we faced together. I was listening to my son rather than simply trying to get through an infusion.
I cannot go back and change the moments I regret. What I can hold on to is that raised thumb — the moment my son showed me he was ready, and I listened.
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 consult your physician or another qualified healthcare 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.
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