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My Son’s Journey with Microcephaly
I keep coming across articles about the Zika virus, depicting anxious young mothers crowding into clinics and perplexed doctors trying to navigate the chaos. As I look at the images of those infants with small, oddly shaped heads, I can’t help but think of my son, Oliver, and the day we received his diagnosis of microcephaly. My heart aches for those families, and I often reflect on how we coped with Oliver’s condition.
I was still in a daze, half-asleep with Oliver nestled in a bassinet beside my hospital bed, when the neurologists arrived. He had been born in the early hours, and I had managed only a few moments of rest. Trying to process their words, I asked groggily, “What’s wrong?” One of the doctors, with neatly cropped hair and tortoiseshell glasses, answered bluntly, “He has microcephaly.” “Didn’t you know during your pregnancy?” he continued. That moment marked the beginning of my life “after”—a life that sometimes feels reminiscent of my former self, but often seems like a story belonging to someone else. I now view my life through the lens of “before and after” moments.
During my pregnancy, doctors had been keeping an eye on Oliver’s head growth with numerous ultrasounds. They repeatedly assured my partner, Nate, and me that there was no cause for alarm, as Oliver’s head was growing, even if it was smaller than average. After chatting with a senior radiologist—a silver-haired man with a warm smile and kind eyes—we convinced ourselves to stop worrying. I think I had to trick myself into believing I wasn’t anxious to get through those last six months of pregnancy. Seeking a second opinion didn’t even cross our minds; we were at one of the best hospitals in the city, with doctors who had delivered countless babies for our friends. Any anxiety I felt, I dismissed.
Microcephaly is a neurological disorder where the brain’s neurons don’t grow properly in the womb. “Micro” means small, and “cephaly” refers to the head. A smaller head equals a smaller brain, since it’s the brain’s growth that causes the skull to expand. The disorder can arise from various factors, including chromosomal syndromes, maternal issues like alcoholism or diabetes, or some genetic anomalies. Years later, we would discover that Oliver’s condition was due to a recessive gene, for which no test exists.
Children with microcephaly rarely exhibit normal brain function. They often struggle with motor skills and speech, and while hyperactivity and cognitive delays are common, the severity varies from one child to another. Unfortunately, there’s no treatment or cure for this condition.
The most challenging part is having a diagnosis but no clear prognosis. No one could tell us how severe Oliver’s impairments would be. For years, we were cautioned against hoping for the best—an impossible task.
Now, I find myself grappling with two conflicting thoughts. I can articulate Oliver’s diagnosis and acknowledge its reality, yet there are days when I still cannot fathom that this has happened to us—me, Nate, our family, or Oliver. Like any parent, we assumed our child would reflect us in some way. We believed—irrationally, perhaps—that Oliver would have the same opportunities as other kids.
Instead, we are left worrying about Oliver’s future. Will he live independently? Have a job? Experience love? Planning for Oliver’s future, even in small steps, feels like walking a tightrope.
When Oliver was born, I wished I had faith in a higher power. It seemed like it could offer some comfort or explanation. I remembered a few small Ganesha figurines I had brought back from India years ago with my uncle. We began placing these tiny statues around our home. Ganesha is known as the remover of obstacles and a symbol of good fortune and wisdom.
Somewhere along the way, I learned that it’s considered good luck to rub Ganesha’s belly. So, every night, we rubbed his belly before sleep, silently making wishes. Nate and I alternated our wishes (two wishes are better than one, right?). I never asked Nate what he wished for, but my wishes changed daily. I would hope for Oliver to roll over, sit up, hold a cup, point, crawl, walk, say “Dada” or “Mama,” and simply be happy.
As I rocked Oliver to sleep, I’d make bargains with him. “Let’s make a deal,” I’d say, “You do your best, and I’ll do the same. Just get as far as you can, and we’ll do everything we can to help.” The love I felt during those moments was immense, often bringing me to the brink of tears. The realization that he loved me, and I loved him, only deepened the tragedy of our situation.
After Oliver’s birth, people expressed a range of emotions that mirrored my own: optimism (“He’ll be fine”), grief (“How will you cope?”), skepticism (“Are the doctors sure?”), hope (“You never know what might happen”), and denial (“He looks perfectly fine”). They offered well-meaning advice: “Join a support group,” “Go back to work,” “Don’t go back to work,” “Take it one day at a time,” “Focus on the present,” and “Think about the future—Oliver will need you prepared.”
At 9 years old, Oliver is an adorable, affectionate, curious, mischievous, and determined child. While he has been delayed in reaching his milestones, he gradually achieves them. For years, he struggled to communicate with words, but his determination to express himself was unmatched. Now, he constructs four and five-word sentences—a milestone we never thought possible, yet still find hard to believe he has reached.
These accomplishments bring both joy and sorrow. Despite his progress, he will never “catch up” to his peers. He may never function in the ways we had hoped. This reality fills me with anger. Yes, it’s been nine years, and perhaps, as some suggest, I should accept his disabilities. However, I know I will always have moments where I confront the gap between my reality and my expectations for life. There are countless moments of joy, laughter, pride, and contentment, but the feelings of anger, sadness, and disbelief are always present. This is our reality.
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