Maricarmen Aguilar's son, Benjamin, has schizencephaly.
An infection that Maricarmen had during pregnancy likely caused it.
This is Aguilar's story, as told to Kelly Burch.
This as-told-to essay is based on a conversation with Maricarmen Aguilar. It has been edited for length and clarity.
When my son, Benjamin, was born six years ago, I was living in a small North Dakota town where my husband worked in construction. I'd immigrated to the United States from Mexico less than a year before and wasn't yet confident speaking English. All of that compounded the nerves I felt as a first-time mom.
I wanted to breastfeed, but Benjamin couldn't latch. The nurses gave me some formula and told me we'd figure it out. I'd only been a mom for two days, but I knew something was wrong.
At Benjamin's one-week appointment, doctors noticed that his head was small. They thought he had microcephaly. They sent us to a city four hours away for more appointments. It was there that Benjamin received a diagnosis of schizencephaly, an extremely rare condition that causes clefts in the brain.
With my husband as a translator, I asked the doctors how this could have happened — I had all my tests and screenings during pregnancy. That's when the doctors told me a common infection that I hadn't even noticed likely changed all of our lives.
I'd never heard of CMV
Doctors tested Benjamin for cytomegalovirus, or CMV. It's a common virus that infects one-third of kids and half of adults in the US. But in most cases, people don't even notice the symptoms. But for pregnant people, CMV can be especially dangerous.
Doctors explained that I must have had a CMV infection during pregnancy, although I don't remember ever being sick. I passed the virus to Benjamin. That's not too uncommon — it happens in about 1 in 200 pregnancies. But for Benjamin, the consequences were dire. Doctors believe he had a stroke in the womb.
I was traumatized at that moment. As the doctor explained, I saw their mouths moving and heard sounds, but I couldn't understand anything.
Doctors couldn't tell me whether Benjamin would live another week or into adulthood. No matter what, they said, he would have a lot of issues throughout his life.
Benjamin is blind, deaf, and has major developmental delays
Today, Benjamin is 6, but he's still like a baby. He's legally blind, deaf, and nonverbal. But recently, we've been seeing progress. He's holding his head up and reaching for toys. Yesterday, he crawled for the first time, and I cried.
We're starting to use brightly colored swatches to let him indicate "yes" or "no." Seeing him learn to communicate overwhelms me with pride. But you have to be patient with him: His brain works extremely hard for every piece of progress.
My husband and I are the only ones taking care of Benjamin. It's intense, especially since my family is in Mexico. We've tried to find a night nurse, but it's felt impossible. Luckily, my sister-in-law is a nurse and watches Benjamin on our rare nights out.
We decided to grow our family and give Benjamin a sibling
Two years after Benjamin was born, our daughter, Rebecca, joined the family. I had every test imaginable and even asked my doctor to screen me for CMV. No matter what the health of this baby was, I wanted to be prepared.
Today, Rebecca sees Benjamin as normal. Last week we were eating ice cream, and without being asked, she got him a bowl with his special spoon. I cried again watching them share a typical sibling experience.
I share our stories — the joys and the struggles — on social media. It's a fine line. I don't want other moms to have yet another thing to worry about during pregnancy. But I also think it's important that women know about this illness and its risk during pregnancy. That way, they can make informed choices about their health and that of their child's, and not be blindsided by a diagnosis the way I was.
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