By Edward Miles*
“Is there any family history of epilepsy?” the pediatrician asked me. I stared back with a blank face. Panic quickly set in. My son, my only child, was six months old and had been having jerky movements that made my wife and me nervous something serious was wrong.
“I don’t know who my biological father is, and I don’t know my true medical history,” I blurted out.
Three years earlier I had taken a 23andMe test, looking to understand how I fit in with my family and ancestry. I had always felt different, but exactly how, I had never been able to express properly. Shortly after my results came back, I received a message from a “close relative” apologizing if he was the first to tell me that I was donor conceived. I learned that either my dad who raised me was also the father of this person—along with at least two others—or our biological father’s identity was unknown. Adrenaline flowed through me in ways I had never known. My heart pounded as I read this email while at work and tried to keep my composure.
I confronted both my parents within days, both of whom were quick to deflect the potentially life-altering news I was bringing to them.
“You’re our son,” my mom exclaimed back with confusion. My dad took a different approach and simply said, “I don’t go digging into the past. You’re my son.”
I had been an only child for about ten years, since my younger sister had passed away. I was left with survivor’s guilt, which only reinforced my role as the “good son.” I didn’t want to burden my parents anymore. “I don’t know what I’ve found,” I thought to myself, “but I will bury it—just like they did.” And I attempted to move on with my life.
When my wife was pregnant with our first child some years later, we went through genetic testing. Neither my wife nor I were carriers for the same genetic conditions. I called my mom and said, “My genetic tests were negative, which is good, but at some point, I’m going to need to know the truth behind my genes. This isn’t just about me anymore; it’s about my unborn child.”
I put down the phone but barely lasted five minutes before calling her back. Extracting answers from her felt like pulling teeth.
I learned my parents had had trouble conceiving, and the fertility clinic they had been going to had offered them “an assist.” They had mixed my dad’s sperm with a donor’s to help boost his low motility—a medical fallacy, but enough information to give potential parents the hope they needed. They were told to go home and try to conceive, and nothing more was spoken of. The advice and instruction they were given had set them up to deny any possibility that I was anything but their own full genetic child.
That denial trickled its way down through the generations, making a thud in my son’s pediatrician’s office. As the pediatrician’s words hung in the air for what felt like an eternity, I made a promise to myself. I had to find out my truth and my biological father’s identity no matter where it led. It was no longer just about me. This was about my son, who, just like me, hadn’t asked for any of this. We both deserved to know our identities and family medical histories.
I set out to piece together the mystery, using whatever strength I had to make sense of the information from 23andMe and, later, Ancestry. It was overwhelming—names, dates, birthplaces, records—but I so desperately wanted it to be a puzzle that I could solve. I wanted to regain some control over this situation, and asking for help was something that took a long time to do.
Eventually, with the help of genealogists, I found him. The donor, my biological father, was not the man who had helped raise me. I would eventually contact my donor, speak with him, and finally meet him, which became the single most meaningful conversation of my life. For the first time, I would begin to understand where and how I fit into this world. I could see the role that genes played in forming my identity. I saw so many familiar traits as I sat across from my donor. They were missing puzzle pieces, but without a picture on the front of the box to reference.
I walked on air for weeks after meeting him. But I had been left alone to figure out my identity, and even my biological family. Their choices and their experiences, along with the guidance from the medical community, trapped my parents in a state of denial.
Thankfully, my son is fine. A pediatric neurologist examined him and concluded that what we had observed was just a part of his development. He’s now a happy, healthy boy. But I’ve since learned enough from my donor to know that epilepsy is present in the broader genetic family, a fact neither my son’s doctors nor I had any other way of knowing.
I uncovered the truth for myself and my child, so I can be a better, more complete, and honest parent to him.
Edward Miles* is a writer, technologist, dad, and brother (in one form or another) to at least 12 others. In his spare time he can be found cooking in his tiny kitchen or biking around New York City. In his 30s after uncovering the family secrets hidden from him, he slowly pieced together that he was donor conceived, a discovery which has completely recolored his past and forever changed his future. *This author has chosen to use a pseudonym
This post was contributed by a guest author as part of U.S. Donor Conceived Council’s mission to educate on the lived experiences of donor conceived people and their families. Guest posts do not necessarily reflect the views or opinions of USDCC.
Top image by Toa Heftiba via Unsplash