Febrile seizures — that thing 5% of kids experience but no one talks about.

Around noon on Friday, February 26, 2021, I was working from home in my downstairs office when I suddenly heard my almost-4-year-old and our family nanny frantically screaming for help. I ran out of my office to discover my nanny, horrified, holding my limp, unresponsive 16-month-old daughter, Ruby, in her arms, Ruby’s face blue as a blueberry.

What followed next was a blur.

In a matter of seconds, I grabbed Ruby and deduced that she had been eating lunch and might have choked. I attempted the Heimlich for about a minute without success while our nanny called 911. I heard myself screaming, crying, begging for help from the 911 operator on the other end of the phone. Ruby’s lips were getting bluer.

I then realized there was air passing through her airway, though it sounded like she was gagging on her own spit. Not choking, I thought. My mind raced.

Our nanny relayed directions from the 911 operator, who advised us to lay her flat on her back on the floor. Her eyes were vacant. I shared in an Instagram post that in this moment, I thought, This is it. But if I’m being honest, that was not the whole thought. It was: This is it. I either save her, or I become one of those moms who’s kid dies.

This was the worst moment of my life.

At this point I thought I’d have to do CPR on her. So not knowing what else to do, I attempted what I recalled from our infant CPR training was the first step: I opened her airway by lifting her chin off of her chest. I then tried to open her mouth, but I noticed her jaw was clenched. I pried it open. I remember cupping her face and crying, screaming her name. Begging her to stay with me.

Just then though, the color came back in Ruby’s face. She was still unresponsive, but I thought this had to be good. As the paramedics charged through the door seconds later, I saw Ruby’s eyes register on me. She was seeing me. And then in a few more seconds, I heard what sounded like the sweetest sound in the world: she started crying.

At that point I was in complete shock. The paramedics stripped Ruby down, took her oxygen levels, and asked if we still wanted to go to the hospital. I said yes. I must have been in a daze because one of the paramedics grabbed my forearms and locked eyes with me and said, “I need you to pack a bag.” A bag, I thought. I know how to do that.

Only then I looked up and saw our nanny whisk my oldest daughter out of the room, who in that moment I realized had witnessed the whole thing. My heart twisted again, as if it wasn’t shattered already.

The Diagnosis and Why You Should Be “That” Parent

The paramedics were wonderful, but because they arrived as the event was essentially resolved, their assessment of the situation was limited. They dismissed the incident as Ruby choking on her lunch.

During the ambulance ride to the hospital, I explained why I didn’t think Ruby was choking. “She was eating mac ‘n’ cheese, which she eats all the time. And I could hear air passing through her airway.” They nodded, but when we walked into the hospital, they briefed the hospital team with the same information: a 16-month-old that choked on mac ’n’ cheese. “I don’t think she choked,” I said again. “She also had a 101 fever this morning, I don’t know if it’s connected.” They nodded.

When my husband arrived at the hospital, I couldn’t find the words to explain what had happened. I just adamantly continued to tell him and anyone else that would listen that my daughter did not choke.

I called our family nanny and asked her for a recount of what she saw. She said that Ruby’s eyes rolled in the back of her head and she shuddered a bit before going unresponsive. She fished the food out of Ruby’s mouth but it didn’t seem like her airway was blocked. A light bulb went off in my head. I remembered Ruby’s locked jaw when I tried to open her airway. “Do you think she had a seizure?” I asked. She said yes.

I shared this with the doctor and nurses, but after a CT scan, chest x-ray and blood test, they determined that there was no sign of a seizure. She also didn’t have a temperature. The final conclusion from the medical team was that Ruby did in fact choke on mac ’n’ cheese.

I was relieved that nothing major was discernibly wrong, but troubled by the diagnosis. I couldn’t believe it, but wanted to trust the experts. I didn’t want to be “that” difficult parent who thinks they know everything. We agreed to be discharged.

But just as we were waiting to wrap up our visit, I felt Ruby start to shake in my arms and once again her eyes went vacant. I screamed for help and a team of doctors and nurses ran in the room. After a second of observation, the doctor agreed with what I already knew: Ruby was having a second seizure. She began to foam at the mouth and her face turned progressively more pale.

Luckily, this episode was only around a minute in length. But it didn’t change my panic and fear. “CAN YOU DO SOMETHING?” I heard myself shouting at the doctor. He instructed the nurse to suction Ruby’s excess saliva and give her some oxygen. Then, just as quickly as it began, the seizure was over. I looked at my husband. He was crying.

After taking Ruby’s temperature, which was 104.7, we determined — finally — that Ruby was having febrile seizures.

The Aftermath of a Febrile Seizure

The National Institute of Neurological Disorders estimates that between 2 and 5% of kids experience a febrile seizure before age 5. If you think about it, that’s actually a staggering statistic. Even as I shared my story in my own personal network, multiple other parents came forward and said that they, too, had a child who had experienced one or more febrile seizures. So why is no one talking about this?

An infant visits the pediatrician approximately eight times before they’re 18 months old. And that doesn’t include any additional issues-related appointments around anything from ear infections to a lack of weight gain. Not once had a medical professional mentioned the possibility of febrile seizures, or better yet, what to do in that situation.

For example, I had no idea that you’re supposed to place a seizing child on their stomach or side, to avoid them choking on their saliva. Or that children having a seizure often only shudder for a few seconds at the beginning. We are trained on choking and CPR, but not seizures. Why?

One reason I suspect is because the medical community generally views simple febrile seizures as harmless. A plethora of studies show that there are no long-term effects on the child. And since they grow out of it by age 5 or 6, there’s no real cause for concern.

While that’s great news for parents of kids with febrile seizures, it doesn’t change the danger that naturally comes with a seizure episode if not properly handled, and the trauma a family experiences in the process.

While I was in full “boss” mode the day of Ruby’s seizure through the end of our ER visit, I was shocked to find that I could barely get out of bed the next day. For three days, I alternated between sleeping (next to Ruby, of course) and crying. I could not get a grip. Even though my mind knew she was fine, my body had seen otherwise — and I could not stop reliving the images of that episode and the feeling that my child was dying in my arms. Traumatic is truly the only way to describe it.

But it turns out that I’m not alone. A study of families following their first febrile seizure experience shows that most parents who experience a febrile seizure with their child did, in fact, think their child was dying. And in the weeks after that first seizure, many of those parents experienced anxiety, depression and dysfunction themselves.

If this is happening in up to 5% of children, why don’t we do more to help parents feel prepared?

Moving On (But Not Really)

This whole experience has left me changed. It’s like no one ever told me that everything I care most about in life is in a fragile glass bubble that could break at any moment. I emerged from this realization in a state of constant marvel at this beautiful family of mine, but also with a lingering paranoia that they could be taken from me at any moment.

And even on the good days, when I almost forget it ever happened, I’ll turn and look at Ruby, sitting across the table from me, smiling, and the image of her blue, unresponsive face will flash across my mind. I’ll recall that horrible moment where I thought I could lose her. And I can’t unsee it. I can’t unfeel it.

She’ll never understand why I now hug her a little tighter, and breathe in the sweet smell her of her skin, hair and baby sweat a little deeper. Or why any time my four-year-old says her name in an even remotely alarming tone, I come running out of my office to see if she’s okay before I even realize what I’m doing. Time is healing, but not a memory eraser.

The purpose of me writing this article is not for pity. It’s because I wish, more than anything, that I had read something like this before February 26, 2021. Because if I did, I might have known what to do in that situation, instead of helplessly watching my child experience what I thought was a life or death moment.

My advice: hold your babies tight. Be unafraid to unapologetically be their fierce advocate. Trust your gut. And share your stories. You never know when you might help someone else.