Lately, I’ve been reading articles about the Zika virus, which describe anxious young mothers filling hospital waiting rooms while doctors struggle to provide care. I can’t help but think of the images of infants with small, irregularly shaped heads—they remind me of my son, Lucas, when he was born. A deep sadness wells up within me for those families, and I reflect on how we coped when Lucas was diagnosed with microcephaly.
I was still half-asleep with Lucas in a bassinet beside my hospital bed when the neurologists entered. He had been born in the early hours of the morning, and I barely had a moment’s rest. Struggling to comprehend their words, I asked, “What’s wrong?” as I propped myself up in bed. “He has microcephaly,” one of the doctors, with close-cropped brown hair and tortoise-shell glasses, informed me bluntly. “Didn’t you know while you were pregnant?” That moment marked the beginning of my life “after”—a life that sometimes feels like a continuation of my old one, yet often feels like a completely different existence. I find myself categorizing my life into “before” and “after” moments.
Throughout my pregnancy, the doctors monitored Lucas’s head growth with regular ultrasounds, assuring my husband, Mark, and I that they had no concerns, as his head was still growing, albeit small. After several discussions with a senior radiologist—a silver-haired man with a warm smile—we stopped worrying. More accurately, I convinced myself that there was nothing to worry about. I suppose that to get through the last six months of my pregnancy, I needed to perform this mental trick. Seeking a second opinion didn’t even cross our minds; after all, we were at one of the best hospitals in the country with a team that had delivered many of our friends’ babies. Any anxiety I felt, I pushed aside.
Microcephaly is a neurological condition where the growth of the fetus’s brain is inadequate, resulting in a smaller head size. This condition may arise from various factors, including genetic syndromes, maternal health issues like diabetes or rubella, or other complications. Years later, we discovered that for Lucas, it stemmed from a recessive gene, a condition for which no test existed.
Children with microcephaly typically face challenges with motor skills and speech, and often experience hyperactivity and cognitive delays, though the severity varies from child to child. Unfortunately, there is no cure or treatment available. The hardest part is knowing that while we have a diagnosis, the prognosis is uncertain. No one could accurately predict the extent of Lucas’s impairments, and we were often told “don’t hope for anything”—a daunting challenge.
Now, I find myself grappling with two conflicting thoughts. I can articulate Lucas’s diagnosis and acknowledge its reality, yet there are still days when I struggle to accept that this has happened to me, my husband, my family, and my son. Like many parents, we assumed that our child would reflect our hopes and dreams. We believed—an often irrational belief—that Lucas would have access to the same opportunities as other children.
Instead, we fret about his future. Will he be able to live independently, find a job, or experience love? Unlike typical parenting scenarios, contemplating Lucas’s future—even in the short term—feels precarious.
After Lucas was born, I often wished I had faith in a higher power. It seemed like it would have brought some solace. I owned a few small sandalwood figurines of Ganesha, the Hindu god known as the remover of obstacles, which I had collected during a trip to India. Mark and I started placing the little Ganeshas around our home, hoping for good fortune. We rubbed Ganesha’s belly each night before bed, silently making wishes. I never asked Mark what he wished for, but my wishes evolved daily—from hoping Lucas would roll over to dreaming he would one day speak the words “Dada” or “Mama.”
When I tucked Lucas into bed, I would hold him close and make a bargain. “Let’s make a deal,” I’d say. “You do your best, and I’ll do mine. Just go as far as you can, and we’ll help you every step of the way.” The love I felt for him in those quiet moments was profound, often choking me with its intensity. The fact that we loved and cared for each other made the situation feel even more tragic.
In the aftermath of Lucas’s birth, I encountered a range of reactions from others, which echoed my own feelings: optimism (“I’m sure he will be okay”), grief (“How will you carry on?”), skepticism (“Are the doctors certain?”), hope (“You never know what might happen”), and denial (“He looks fine”). Friends and family offered well-meaning advice, suggesting I join a support group, return to work, or focus on the present and the future—reminding me that Lucas would need us to be prepared.
Now at nine years old, Lucas is a delightful, affectionate, curious, and determined child. Though he has faced delays in achieving milestones, he has gradually met many of them. For years, he struggled to communicate verbally, yet his determination to express himself has always shone brightly. Today, he uses four- to five-word sentences—a milestone we once thought improbable, and yet now feels surreal.
These achievements bring joy, but they are tinged with bittersweetness. Despite his progress, he will never fully “catch up” or function in the ways we once envisioned for him. This reality stirs feelings of frustration within me. Perhaps after nine years, I should have come to terms with his disabilities, but I know I will always experience moments where my reality starkly contrasts my expectations.
There are countless instances of joy, laughter, and pride, but feelings of anger, sadness, and disbelief linger just beneath the surface. This is the life I lead.
For more on parenting and navigating challenges, check out our resource on pregnancy and home insemination at WHO’s Pregnancy Resource or visit Make a Mom for insights into fertility. If you’re interested in our approach to home insemination, you can learn more in this post about our journey here.
Summary
The journey of parenting a child with microcephaly is filled with conflicting emotions, from the joys of small milestones to the sadness of unmet expectations. As families navigate these challenges, the support of community and resources can provide comfort and understanding.