There are moments in life that seem to disappear, while others have burned into my memory. I can remember a moment that took place 20 years ago, and my heart rushes as though it happened only seconds ago. Sometimes that can be a good thing, but sometimes the memory can bring back all of the pain and doubt of the original experience.
When my eldest son, Julian, was born in June 1996, his diagnosis of hemophilia was completely unexpected. The day after his birth Julian was circumcised. I had no reason for concern until nurses returned him within half of an hour, his diaper filled with blood. The nurse took him to be checked.
Before I could say a word, my mother looked at me as we were alone in my hospital room and said, “What if he has hemophilia?”
I looked at her perplexed and responded, “Hemo-what?” At that moment, a nurse walked into the room and interrupted any further conversation.
The next day, a team of doctors came around, and the hematologist told me, “Mrs. MacDonald, your son has severe hemophilia.”
As they left the room, my mother said, “Don’t tell anyone.”
I asked her, “What do you mean? ‘Don’t tell anyone.’ I can’t keep secrets like that.”
I don’t remember what happened next because of the confusion at the time. My mother died five weeks later, and it took over 10 years to discover the truth about my brother.
My parents had told me that I’d had a brother who died from jaundice. Did people really die from that? It had never made sense to me, and if I ever asked questions about him, they immediately silenced me.
When my mighty warrior, Caeleb, was born in January 2006 and diagnosed with severe hemophilia, I knew I was a carrier. And in an instant, my mother’s question in 1996 came back to me. I knew I had to uncover the family secret.
It took just one phone call to reveal the secret. My Aunt Mary remembered that my brother was badly bruised when he was born. My heart skipped a beat — I realized my brother had hemophilia. Then, following many conversations with doctors, I learned that my brother died from hemophilia complications.
Ronaldo Julian Campos was born on May 23, 1962, in a small, South Texas town. I envision my dad holding him for the first time with adoring eyes, drinking in the beauty of his son. And my mother holding her baby boy with joy, and possibly, fear.
My parents didn’t know they would have only five days with him. Ronnie died on May 28, 1962. I still have more questions than answers, but I now know, all these years later, that it is my mission to make sure he is not forgotten.
Ronnie was here. And he mattered.
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.
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