After my son’s diagnosis, hearing he’d ‘live a long life’ what just what I needed
The doctor's words brought immense relief following Julian's diagnosis
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My oldest son, Julian, caught me completely off guard recently.
“Dad,” he said when I answered his call. “When the hematologist and her medical team entered the hospital room to tell you and Mom that I had hemophilia, what did you need for them to say to help you process a chronic diagnosis?”
There was a long pause as I tried to find the words to respond. I hadn’t thought about Julian’s diagnosis for a very long time.
“I totally understand if you don’t have an answer,” Julian said, acknowledging it might not have been a fair question, given that he was asking about something that happened almost 30 years ago.
The words I needed to hear
No, I said. I remembered every detail.
I told Julian how he came to be diagnosed with hemophilia A, how he was brought into the world by cesarean section, and how he wouldn’t stop bleeding after his circumcision. A hematologist was summoned to run tests, and a factor VIII replacement therapy was brought in to help his blood clot.
After his birth, my wife and I thought a doctor would stop by, we would say thank you, and be on our way. A diagnosis of hemophilia was unexpected. I knew nothing about the disease, and those first moments felt uncertain and fearful. We asked: “Is he going to live?” The doctor assured me that my child would live a long, meaningful life.
Those were the words I needed to hear, I thought to myself. My son will live a long life. We breathed a sigh of relief.
“So, Dad,” Julian said, snapping me out of my trance. “The first thing you needed to hear was that I would be OK? Did you need anything else?”
I did have a lot of other questions, to be sure. What kinds of limitations would he have? What would his future look like? I remember feeling unsettled as the medical team left the room without providing us with any information about his treatment. I knew I needed to find some answers.
I sought out a doctor who specialized in hemophilia, and my wife and I discovered the Gulf States Hemophilia and Thrombophilia Center. When Julian was about 2 months old, we took him to meet Keith Hoots, a leading hematologist specializing in the treatment of bleeding disorders. The medical team at our new hemophilia treatment center insisted that we connect with the Lone Star Bleeding Disorders Foundation, and Lisa Grasshoff, a hemophilia parent and advocate, became a guiding light for us. Her encouragement led us to discover an essential support system that helped us share our experiences and find hope and comfort.
Finding our tribe became a gift from heaven.
“And so are you,” I told my son.
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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