Ultrasounds are often one of the most thrilling parts of pregnancy. Whether you’re discovering the gender, witnessing that tiny heartbeat, or checking the baby’s size and position as delivery approaches, there’s so much anticipation in catching a glimpse of your future.
You might assume that hearing “twins” is the most transformative moment during an ultrasound. In our case, however, it was a different experience entirely. Our lives were irrevocably altered, not just by the news of twins, but by a gut-wrenching moment that no expectant mother wants to face. It was that unsettling silence from the ultrasound technician, the way the wand lingered too long on one area, and the unnerving need to return for a second look. Time felt like it stood still.
The following weeks were a whirlwind. Something was wrong; everything felt wrong. Our boys’ brains, those tiny precious brains, were not developing as they should. We received the diagnosis of a rare neurological condition known as Lissencephaly, and the prognosis was bleak.
We were given a heads-up. We learned about low muscle tone, developmental delays, seizures, infantile spasms, vision impairments, feeding difficulties, pneumonia, aspiration, and the risk of failure to thrive. We heard that life expectancy could be as short as two years. We held on to hope, but deep down, we feared it was true. And so, we carried on.
I often find myself grappling with the reality of our situation. I’m saddened that I can’t change the circumstances, disappointed that our fears were confirmed, and heartbroken that I can’t just fix it. Yet, I remain undeterred. I didn’t bring my boys into this world because I believed the doctors were mistaken. I didn’t think we’d be the first to conquer this disease. I had them because my love for them is unwavering and unconditional, no matter how challenging it becomes.
So far, my twin boys, now a year old, have exhibited the classic signs of Lissencephaly. They experienced early seizures, infantile spasms starting at around 4-6 months, cortical vision impairment, and severe hypotonia. They are developing at the level of a 2-month-old and are fighting hard to reach the milestone of two years. As I write this, Ethan is in the children’s hospital, bravely battling pneumonia (and doing exceptionally well).
I’m also putting in the hard work. This journey is tough—not just occasionally, but most of the time. When I get that obligatory “I don’t know how you manage,” I smile because I honestly don’t know either. I wonder how any mom watches her child struggle, witnessing them lose battles and the overall war against a condition. Yet, I know the reason behind it all. It’s every kick, every smile, every good day—even if it’s followed by a hundred bad ones—that makes it worthwhile. Every moment, every memory, every single part of their existence is cherished and adored.
Because boundless love and unyielding hope are integral to being a dedicated mom.
For more insights into pregnancy and home insemination, check out this excellent resource from the Genetics and IVF Institute. And if you’re looking for the right tools, you can find great kits at Make a Mom, including their at-home insemination kit, which is perfect for those venturing into this journey.
Summary
This article reflects on the challenges and joys of parenting twins diagnosed with Lissencephaly. It emphasizes unconditional love and resilience in the face of adversity, offering a heartfelt perspective on the ups and downs of this unique journey.