A little trick helped my son learn how to manage a fear of needles

It’s hard to believe, but my youngest son, Caeleb, will graduate high school in just a few months. I think back over the past 18 years of his life and stand in awe regarding the difficulties he’s faced while living with hemophilia.

In his elementary school years, he struggled to keep up with his schoolwork because of the countless hospitalizations that were a direct result of breakthrough bleeding episodes in his right ankle and knee. I want to say that his high school years were much easier, but that’s not the case. Caeleb struggles with chronic pain in his target joints that often leaves him unable to walk for long durations of time.

I look at his incredible story and cannot believe I witnessed all of his struggles with hemophilia. Not only was I present throughout his life, but my role as both his father and caregiver gave me a unique perspective on the challenges he faced through the tough years of his childhood.

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The challenge of the needle

Many times, for instance, I looked into his beautiful green eyes as fear overcame him when he was being infused with Advate (octocog alfa). My first reaction was to protect him so that he wouldn’t hurt anymore, but nothing I did could relieve the anxiety he felt at the thought of a needle poking through his skin.

In the moments of Caeleb’s greatest struggles, I must admit that I let fear get the best of me and responded to his cries with anger. In my brain, I thought, “If he would simply stay still, infusing would be over in a heartbeat.” I regret that it took me awhile to figure out how to ease the situation.

The day I found the magic trick to keep him still began like any other day. My son was 7 years old, and it was time to infuse. Right away, I could see the panic in Caeleb’s eyes. I noticed how he tightened up and prepared himself to go to war against the big needle required to go through his port.

That morning, I stopped what I was doing and said, “Hey, buddy, let’s play a little game today. I want you to make a fist and stick your thumb straight in the air when you’re ready to infuse.” He did as I asked, but didn’t put his thumb in the air. Instead, he placed his thumb right on his other clenched fingers. I assured him nothing would happen until he gave me the green light.

Slowly, he lifted his thumb higher and higher until it was straight in the air. He looked at me and informed me that he was ready to infuse. I said OK while secretly expecting the usual struggle, but Caeleb proved me wrong. I didn’t move a muscle as I pushed the needle through the skin and into his port.

For a moment, I couldn’t believe that we’d infused without our usual problems. While it took about an hour to see his thumb point up to the sky, the time grew shorter with each infusion until the point where he looked at me and said, “Daddy, every time we infuse, my thumb is already up.”

At that moment, when everything seemed to go right, I realized the source of my son’s fear. He needed to have some sense of control over his body. My buddy didn’t want anything to happen to him until he had some say in his care. I couldn’t fault him because I couldn’t imagine living in a world where I lost the ability to make my own choices regarding medical concerns or anything else. The only way he could express himself was to fight back.

At 18 years old, Caeleb still struggles with a fear of needles, but he manages to cooperate with his medical team by using the tools we’ve taught him. He knows how to remain calm by practicing deep breathing techniques and, when necessary, using his thumb to let us know when he’s ready. I don’t question his process because he has a right to control his environment. We should honor his choice.

We expect others to do the same when we’re the patient. Why should a child have any less agency regarding their care?

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.