In the first few months of her baby’s life, Leah Myers worries that something is off.
TRANSCRIPT
Ben's story starts out like a dream, the kind of fairytale that every parent hopes for. He's born on a Friday, weighing 8 pounds, 9 ounces. The moment I lay eyes on him, I know I have never seen anything so perfect in my entire life. I swear, he's the prettiest baby in the nursery and that's a fact, not my bias.
The first morning after he's born, I'm just too excited to wait for help. I get myself out of bed and I dress Ben up in the softest baby blue sleeper that I had packed with so much anticipation. Seeing him in that little baby sleeper just made my heart want to burst with pride and love.
I had waited for that moment for 20 weeks ever since we had learned that he was a boy on the sono. I don't need to wait anymore or imagine. My baby is here and I am a mom. That feeling of holding your child for the first time, of looking down and thinking, “I did this. I created this life,” is overwhelming.
As a kid, I'm always the neighborhood babysitter, always pretending to be a mom. Caring for kids is a huge part of who I am. I imagine, one day, I'll have a family of my own and it'll be big, a whole gang of kids running around. Everyone that knows me doesn't doubt that's my destiny.
But as my 20s roll into my 30s, the dream of a large family starts to slip away. At 34, I finally get those two pink lines on the test. My dream is coming true. But because of my age, my pregnancy is deemed high risk, but I couldn't care less. None of that matters to me.
I figured this might be my only chance so I'm going to cherish every single second of it. Every flutter, every kick, every movement feels like magic. I'm literally glowing, the happiest pregnant woman you could find. I've waited so long and now, finally, it is happening.
The first few months after Ben is born are a blur of joy and exhaustion, as it is for any new parent. I'm mesmerized by every little thing that he does. But underneath that joy, I have this gnawing feeling that I just can't shake. I keep telling myself that all babies are different, but something about Ben is, I don't know. It's off.
My mom friends brush off my concerns, tell me it's hormones or first‑time mom and not to worry. And Ben is an easy baby. Super laid-back, very mellow. He barely cries. But there are moments when I look at him that I see something that feels wrong. He seems too flat, too disengaged at times. He won't nurse, although I try everything.
He won't make eye contact with me, and that's probably the hardest part because I've dreamed of those intense bonding moments where you're feeding your baby and you lock eyes and the whole world melts away. I want that so badly, but it doesn't come.
I start to think, “Maybe I should blame myself. Maybe I'm doing something wrong.” But, deep down, I know Ben isn't like the other kids that I've cared for in my past and that really scares me.
I try to voice my concerns to his pediatrician, and every single time I'm dismissed. I hear it all. “You're a paranoid first‑time mom. He's a boy and boys are lazy.” Which isn't untrue, right?
But just before he turns one, the changes become undeniable. He stops smiling. He loses the few sounds that he was making, which were ‘Mama’ and ‘Dada’. I feel like I'm watching my baby slip away.
My husband and I are sure it's autism and we try to brace ourselves for that reality, but, still, I find myself clinging to hope. I want to believe that Ben will be okay, that he's going to be the kid that I dreamed of and that he's still in there somewhere waiting to come out.
At Ben's one‑year checkup, we stand strong. We stand our ground and we demand to be heard, insisting that something is wrong. We're finally referred for developmental and hearing tests, but six days later, Ben starts to have seizures.
At first, I don't even recognize these as seizures. They don't look like what I had imagined. No convulsions, no dramatic movements. Just these quick, aggressive head drops that happen over and over and over again in clusters, one every six seconds. On bad days, these clusters lasted up to an hour. It's terrifying, but because we're so fixated on the idea of autism, it doesn't occur to us that this could be medical.
Thankfully, I've been persistent with our pediatrician. So, when I call to report it, she says, “Get to the neurologist really quickly.”
Suddenly, we're plunged into a world we don't understand. Conversations about brain disorders, terrifying diseases, even end‑of‑life care. It all feels surreal. Like, how did we just go from me trying to convince the doctor something was wrong to having a seriously sick baby? It all escalates so fast.
Within a few weeks, we learned the truth. Ben has a type of epilepsy called infantile spasms. The first thing that comes up when I Google it is an article titled “Little Seizures, Big Consequences.”
I'll never forget reading those words and feeling like my world is collapsing around me. The prognosis is grim. 90% of babies with infantile spasms either don't survive childhood or go on to living an extremely disabled life.
But I grab on to the only hope I can find in there, that 10% chance that we can still be one of the lucky ones and I tell myself we're going to do everything we can to fight our way into that 10%.
The first treatment is a brutal round of steroids, the kind of dose that you'd give to an adult. Ben's little body doesn't handle it well. He swells up, his sweet face red and puffed. He loses every single milestone he had gained in his first year. He can't even hold his head up anymore.
But when I call his doctors desperate for reassurance, they tell me to keep going, so I do. I force that drug down his throat four times a day, hoping it will work, praying it will stop his seizures, but it doesn't. Neither does the next drug or the next or the next.
Each time we start a new medication, I let myself hope again. I picture Ben's future, imagine him laughing, running, maybe playing Little League one day.
Then one day during a new round of treatments, Ben goes an entire day without having a seizure. My husband and I, we hold our breath, not wanting to get too, too excited, but that night we let ourselves dream again. We talk about what sport Ben might like, what it would be like to see him in that Little League uniform. I can picture it so clearly, a bat in his hand, grinning from ear to ear.
But at 2:00 AM we're jolted awake by the sound of Ben's head hitting the crib rails as another seizure hits. Crash! It's like the sound of hope shattering.
This goes on for months. Each new drug, each new glimmer of hope, followed by another crash, another heartbreak. I hold on to the belief that we have to be one of the lucky ones.
After months of searching for answers, we seek a third opinion in New York City. This doctor admits us right away and we spend eight long days in the pediatric ward at NYU Langone Medical Center.
I will never forget how small that room feels, crammed with machines monitoring my baby's brainwaves. He's hooked to wires. There's a camera always watching us. There's no privacy, no peace. I sleep on this crappy, blue pleather chair next to his hospital crib.
Ben is hooked up to everything. I have to jab him in his thigh with injections twice a day and he barely cries. Neither do I. I hate it. I hate every moment, but I cling on to the hope that this will be the treatment that works.
Then, miraculously it does. Ben’s seizures begin to slow and then, after five days, they stop all together.
We're ecstatic. And at our follow‑up EEG, the doctors are just as thrilled as we are. They said that they see major Improvement on his EEG.
I allow myself to believe that we're finally in the clear. Ben's going to be okay. We are the lucky ones.
As we prepared to leave the hospital, I called my sister to share the good news. And while I'm on the phone with her, I turn around just in time to catch Ben having a major seizure.
I drop the phone, hit the nurse call button and I start screaming for help.
The next 45 minutes is a blur. I remember holding Ben as he continues to seize. The clinical team comes in. They get me to sit down in that hateful blue chair. They shove a pillow under Ben's head so it won't hit the armrest on the chair as it violently drops over and over and over again.
I'm hysterical, completely opposite of the hopeful composure I've been able to keep up with since diagnosis. The tears flow steadily as I unleash the pain, as I've not yet let myself grieve. I start to cry that I'm going to lose my job, that Ben will never play in Little League. I'll never be able to have another baby, killing my dream of a large family.
I'm completely disoriented by the swing from elation to devastation. It's like the rug was pulled out from under my feet, leaving me emotionally freefalling, just trying to make sense of this abrupt shift.
The team just sits and listens and monitors Ben. They don't even try to tell me it's going to be okay.
My husband walks in somewhere in the middle of this. He has no idea what had just happened and he has this profound look of helplessness on his face, yet I'm incapable of comforting him as I'm still in crisis myself.
As Ben's seizure begins to slow and eventually stops, so do my tears. I'm utterly exhausted and barely able to function. Somehow, we managed to pack our bags, go through the discharge process and load up into the car to drive the five hours home.
I sit in the back seat with Ben and I stare at him. He sleeps most of the way, being post‑Dicel and snowed on drugs to stop his seizures, and he seems different to me somehow, almost like a different baby.
I'm tortured with the guilt of feeling that this is not the kid that I had planned for, that I had dreamed of. That baby is gone and I'm going to have to figure out how to parent this beautiful boy an entirely different way than I had ever planned.
We were so close to being one of the lucky ones.
Thank you.