Reliving when I felt trapped underwater and fought to reach the surface

Raising two sons with severe factor VIII deficiency, otherwise known as hemophilia A, often overwhelmed me. When I look back on the most terrifying moments, the vision is always the same: I am submerged beneath a large body of water, fighting to reach the surface so I can breathe. I try to swim upward, but every time I reach the surface, something pulls me back. The more I struggle, the more energy I lose, and I can barely summon the strength to move.

That sense of being trapped and out of control visited me many times, often when I had to infuse my sons with clotting factor.

One memory that evokes that feeling was when my oldest son, Julian, was about 7. We had been talking and laughing together about placing the needle in his vein and giving him the medication he needed to clot, but I missed the vein in his right hand that we used to call Ol’ Faithful and worked to reset the needle while it was still under his skin. Julian began to cry as I started over, and I remember asking myself how I could have missed the vein. But after starting over, I found his saphenous vein near his ankle and slid the needle under his skin. Voilà! The red gold entered the small tubing attached to the end of the needle, and I was able to push the clotting factor in.

Another bad memory

As bad as that memory is, one I have about my youngest son is far worse.

Caeleb was allergic to factor VIII and had to use a bypassing agent called NovoSeven (eptacog alfa [activated]), but in this moment, his vein rolled as I tried to put the needle into his hand, and then the saphenous vein in his ankle rolled, too. What started as panic turned into a full-on anxiety attack.

I remember struggling to keep my wits about me, but I managed to ask my wife to try a third stick. We have a two-stick rule in our house when we have to go vein shopping. Caeleb cried and screamed, and all I could say was that I didn’t blame him, but then my wife found a big, gushy vein on his arm, and with one poke, the needle went in. I saw her look upward and mouth a “thank you” to the skies.

My sons are older now, and the rhythm of our lives has changed. Julian and Caeleb learned how to treat themselves, and my days of feeling trapped underwater became fewer. It was no longer up to me to get the needle in the right place every time.

Somewhere along the way, I found my way to the surface. While I still carry concerns for both of my sons, I trust that they know how to care for themselves and know how to do the next right thing. I can say, unashamedly, that life is good.

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.