Managing Multiple Hemophilia Diagnoses: How My Family Responded

As I mentioned in an earlier column, the news that my firstborn son had hemophilia caught my wife and me entirely off guard. When we spoke with the obstetrician, the only word we heard was hemophilia. We later learned that my son had another diagnosis: a low inhibitor titer.

The specialists at the hemophilia treatment center explained that my son’s immune system fights against the product he needs to form clots. I immediately thought of the Ms. Pac-Man game and the way she ate the little dots while running from ghosts. Inhibitors work in a similar way: They eat up the factor VIII.

We immediately began a therapy called immune tolerance to treat”MacDonald the Older’s” inhibitor. The goal of the treatment was to overrun his system with factor VIII to kickstart his body’s production of clotting agents. We attended the hospital numerous times to review his levels. After two years, the regimen appeared to work, and we transitioned from one treatment to a prophylaxis system of thrice weekly infusions. In my oldest son’s case, the treatment was little more than a hindrance.

Our relationship with the term “inhibitor” was much different with “MacDonald the Younger.” Both of my sons had the same diagnosis but different manifestations of hemophilia. Where our older son had a low titer, our younger son’s inhibitor developed an extremely high titer.

To put it in layman’s terms, in my younger son, Ms. Pac-Man ran with a speed unmatched even by a cheetah. We could not treat our younger boy with the same protocol with which we treated his brother. It took many years and a host of new complications before we could use factor VIII on my young, tough guy. I’m still amazed at his strength and perseverance through those hard times.

I don’t understand why hemophilia touched our family the way that it did, but I do know that it drew us closer to one another. Both boys, with severe factor VIII deficiency, had such strikingly different challenges. And we give thanks for the lessons that both of our stinky sons taught us about strength, hope, and advocacy.

We never stop learning from one another, living each day as a gift. We learned that we are a resilient crew and can handle more than one diagnosis. We work together to lift one another up when we are down and to find creative ways to solve problems.

In addition to my home life, hemophilia also informs my professional life as a pastor. I feel connected in a completely new way to the many parishioners who come to me with the same questions that I ask myself each day: “Why my child? What did I do so badly that my child must suffer?” I try to give myself the same advice that I give to others, “I cannot tell you why, but I can tell you who will be here with you as you are weathering the worst parts of the storm.”

Those who gather around us make up our community. They join us through the highs and lows of our journey and share our times of tragedy and joy. I will never know why one diagnosis was not enough for my family. But I know who I can rely on. May you find a supportive community to accompany you on your journey.

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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.