Dr. Jessica Brandes said being a mom to her 8-year-old twins, Oliver and Wiley, is who she is, among other things.
And because of that, when one of her sons passed away, so did a part of her. As Brandes wrote in an article shared on her LinkedIn account after her son Wiley’s passing, she encouraged people to ask her about his death.
She explained that while it’s often considered “rude” to do such a thing, talking about Wiley helps her and her husband heal a little each time. Which is why Brandes decided to write about her son’s life and share it with the world:
In general, he was happy and healthy and had been to his pediatrician, eye doctor and dentist all within one month of his death. He was smart, artistic, ambitious and funny, an incredible dancer, excellent taste in music and movies. He had the most gorgeous blue eyes; was tall with huge feet and seemed to be outgrowing everything within 2 weeks.
On top of that, Brandes writes that her son was mature. He understood concepts like religion and politics. In Wiley’s short time on earth, he lived an incredibly fulfilling life. The 8-year-old had visited 10 countries and lived in London for 18 months.
Not only that, but Wiley had the chance to drive a car, kiss girls, and even fall in love once:
He never knew heartbreak and while we will forever know that pain, I think it’s incredible that he loved and never experienced the pain of romantic rejection.
Brandes said that their first and only clue they have that could explain his passing was the seizure he suffered nine months ago.
The mom continued:
We were traveling and he was sleeping in a strange bed in an Airbnb. My mother in law and I heard a significant thud and rushed into the room to see what had happened. He had fallen out of the bed and was actively having a tonic-clonic seizure. To our knowledge, this was the first of it’s kind and certainly the first one we had ever witnessed. He recovered, as most people do from a seizure with no memory of the event whatsoever and we immediately visited his pediatrician who subsequently ordered an EEG.
Following his appointment with his pediatrician, Wiley was diagnosed with Rolandic Epilepsy.
Brandes explained that doctors described his prognosis as “incredibly good.” And when it came to medicine, they believed that the side effects “would be worse than the condition we were treating”:
This specific form of nocturnal epilepsy is a “childhood” form and “benign”. We consulted with 2 neurologists in the US and in the UK. These highly trained physicians, told us he’d suffer no cognitive deficits, that he would outgrow his condition… Since he was incredibly unlikely to have his life disrupted by this epilepsy, there was no reason to alter his life with side effects. His seizures were related to his sleep cycle and we vowed to keep his quantity of sleep as regular as possible so as not to trigger seizure activity.
Brandes continued, adding that after receiving Wiley’s diagnosis, she and her husband put plans in place. They explained his condition to Wiley, they talked to every parent in the event of a sleepover, and they notified his school and his babysitters.
And for the next nine months, they never saw Wiley have another seizure.
Then came the morning Wiley slept in later than usual:
I found him later in the morning after I became suspicious that “sleeping in” had lasted too long. Oliver had been playing on an iPad next to Wiley and I found it strange that Wiley had not woken up and started playing as well. He was under a blanket and his feet appeared mottled. That was the moment. The moment I knew what was coming next. My eyes tracked up his legs as I pulled the blanket back and I traced the deep purple color of lividity. This extreme color change indicated to me my son had been dead for at least 8 hours. I felt for a pulse and somehow felt surprised by the cold skin I touched. There was no emergency, no opportunity for intervention where I could have changed the outcome. He was gone and I knew events would move very quickly.
Before calling 911, Brandes called her husband. She asked him to come home.
After hanging up with him, the mom called 911 then she used the time she had before first responders arrived to “explain to Oliver that his best friend had died and 15 people were about to swarm our home. I asked him to pick a location where he would feel safe. Then, sirens.”
After the firefighters, EMTs, and police officers all finished their protocol, Brandes explained that they took their final moments with Wiley before her husband walked their son out of their home with the medical examiner by his side and before they knew it, it was just the three of them:
We believe Wiley died of a phenomenon called SUDEP (Sudden Unexplained Death of Epilepsy). If you think of brains as being the computers of the body, Wiley’s just turned off. No known trigger, no warning. It just shut down and without a brain, there is nothing.
However, as Brandes explained, everything else will need to be ruled out before his cause of death is made official because there is no proof of SUDEP.
Now, as the mom explained, her family is still learning how to function as a family of three. And these are some of the things she’s learned since Wiley’s passing:
If we’ve learned anything at all, it’s that life is fragile and time really can be so cruelly short. We wish a lot of things were different, but mostly we wish we’d had more time. If you are a parent and have any capacity to spend more time with your kids, do. When it ends, there’s just photos and leftover things and time is no longer available to you. It is priceless and should not be squandered. Take your vacation days and sabbaticals and go be with them. You will not regret the emails you forgot to send. From now on, if you email or text me and my reply takes longer than expected, know that I am with the people I love sharing my time, creating my new identity and I encourage you to do the same.
Shortly after sharing her family’s story, Brandes article went viral, garnering the attention of thousands. And many thanked her and her husband for being so open and honest.