Soaring to high notes while managing a mouth bleed
My oldest son with hemophilia sings despite the effects of a tooth extraction
As a proud dad, I must brag about the incredible voice of my oldest son, Julian. He soars to high notes effortlessly with a rich and full sound. I feel transported when he sings because of his passion for and delivery of each note. My son leaves nothing to chance when he makes music, and each tone has something unique to convey. He doesn’t simply create music, but becomes one with each melodic phrase.
This week is Julian’s last in the Appalachian Mountains of North Carolina. He started his performance contract there in May and enjoyed his growing list of professional engagements, but staying there such a lengthy time proved difficult because the area was remote; in fact, the nearest decent-sized town is Asheville, a two-hour drive from his theater. Since he doesn’t have a car, it’s almost impossible for him to go there. Thus, he now looks forward to returning to his creature comforts.
Unfortunately, the past few weeks have proved stressful for Julian, who has hemophilia, because of a much-needed emergency tooth extraction. While I spoke about his condition in last week’s column, an unfortunate development occurred. The clot over his gums never fully formed and continued to bleed. My son had packed two emergency doses of factor VIII and his regular doses of Hemlibra (emicizumab-KXWH). Try as he might, he couldn’t stop bleeding.
Bleed management and its challenges
As he struggled to use every technique he knew to stop the flow of blood, emergency medical technicians in the remote mountainous region suggested that he go to the hospital in Asheville. After he made many unsuccessful attempts to get a ride there, the emergency team took him to a more prominent medical center. In this larger facility, he could receive his lifesaving factor VIII in addition to Amicar (aminocaproic acid) in hopes that these would stop the bleeding once and for all.
My phone rang during my morning routine of preparing for the day, and it was Julian’s number. Immediately, I braced myself for more unwelcome news. But after the sixth day of continuous bleeding, this newest cocktail of medications did the trick. Julian called me to let me know his bleeding had stopped. I breathed a sigh of relief and told him for the 44th time how well he handled the situation.
Several things caught my attention as my son honored his contract by continuing to perform, even while managing a bleed in his mouth that never seemed to stop. First, Julian can manage his disorder, even without my advocacy. He knew what to do, and while I never want to give up my role as his greatest champion, I felt a sense of pride as he never let hemophilia stand in the way of his commitments. He was, and is, a champion, through and through.
Second, my heart soars as I watch him follow his passion. Julian’s love of singing is strong, and nothing, not even a cruddy mouth bleed, can stop him. Watching him sing on stage, one would never know what he faces in his profession. He must consider nearby emergency facilities when signing contracts in case something like a spontaneous bleed occurs and his medicine does not bring relief.
My phone rang again, and it was Julian’s voice. He wanted to know if I’d seen the recording he’d sent me and if I had input before he posted it. I held back tears and told him that the video was incredible. “Go ahead,” I said proudly. “Let the world know what you have to offer. It is amazing.”
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.
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