Our Child Has a Dravet Syndrome... How Does It Affect His Siblings?

When I was pregnant with Will, my second baby and Dravet child, I had their whole lives pictured in my head. I was an only child and was so excited for my oldest, Ben, to have a brother. I knew there would be fights, but also sports, Hot-Wheel-track building, movies, and a built-in best friend that I had craved so much myself as a child.

One of the things I thought about the most was bunk beds. They were less than 3 years apart and I would walk through the bunk bed section of IKEA, dreaming of the nights they'd spend arguing over who got which bunk, then whispering to each other long after they were supposed to be in bed. I could not wait.

Then, Dravet happened and that dream ended. Our new dream was keeping Will alive.

Epilepsy affects the siblings, too

Our older son Ben's life changed instantly at 3 years old. When Will would start seizing, we would immediately take Ben to our neighbor's house where he would spend the night with them while we rode in the ambulance with our baby who would end up seizing for hours and eventually intubated.

His world had been flipped upside down. From only child, to new big brother, to brother to a baby that would make the "cool ambulance" come, sending him to the neighbors and telling mom and dad "bye" over and over again.

The weight on his little shoulders

The grief I feel for their brother relationship still sits in my stomach as I type this. Ben loves his brother and even knows the basics of his rescue plan. He has watched over him and gotten us for seizures.

He is incredible, but I know the weight is heavy on his little shoulders which is why we are proactive and have him in monthly therapy. I firmly believe in therapy for a Dravet syndrome household, as this world is so unpredictable, heartbreaking, and hard to navigate alone.

The lasting effects of a Dravet syndrome diagnosis

When COVID happened, I felt in my heart that we needed one more baby. I had been so traumatized by Will's babyhood. I couldn't even finish his baby book for 5 years because looking at his baby pictures brought me so much grief from the "what could have beens." The pages of milestones that I could not fill because he never reached them were too heartbreaking at the time.

This heightened how I felt about having one more baby and getting to have that wholesome experience of watching them hit milestones and knowing it was a matter of "when" and not "if."

Adding another sibling to his support system

In February of 2021, I had my daughter, Charlotte, who coincidentally shares a name with Dr. Charlotte Dravet who discovered Dravet syndrome. We consider her our rainbow baby because she brought us so much joy watching her hit milestones, hearing "mama" and "dada," and getting to spend her babyhood at home instead of in the hospital.

As she gets older, she and Will fight over the same toys, but she is fiercely protective of him to anyone else. Ben loves seeing Will at school and telling everyone he's "Will's brother."

Dravet fosters empathy and compassion

Our family is complete, and while I still grieve the thought of bunk beds and a typical sibling relationship for our children, I also see how Dravet syndrome is molding them into empathetic, compassionate humans who will someday change the world for those who do not have a voice. For those like their brother. For those like Will. And that brings me solace.