We were enjoying a beautiful family weekend at the beach. After a day playing in the sand Pierce, our 3 year old son began feeling ill but went to sleep peacefully and stayed that way until morning. When we heard him wake up shortly after sunrise I picked him up and put him in bed with us for a cuddle. As we watched him, half asleep something strange began happening. Pierce’s body stiffened, his eyes shifted to one side and his breathing slowed to the point that we were terrified he stopped breathing. We immediately called 911. I knew as I watched him this was a seizure. He had never had one before, but I recognized what it was and it rocked me to the core. His lips were turning blue we were panicking. The entire event lasted about 3 minutes but felt like 3 days in slow motion.

That event was the beginning of a tragic downward slide for our beautiful baby boy. Subsequent seizures resulted in a diagnosis of Epilepsy. We didn’t know much of what that meant at the time. We were grossly uninformed and felt ignorant about our lack of knowledge. We began scouring the internet and reading all books we could find on epilepsy.

Epilepsy is a neurological disorder which briefly interrupts the normal function of the brain. These brief interruptions or seizures are characterized by a sudden change in movement, behavior, sensation or consciousness produced by an abnormal electrical discharge in the brain. Epilepsy has a variety of causes. The leading cause of known epilepsies is a major head trauma. Other causes can include stroke, infectious diseases such as encephalitis and meningitis, diseases that cut the flow of blood to the brain, tumors, alcohol, and drug abuse, birth trauma and high-risk pregnancies. Some epilepsies are genetic. Many causes of epilepsy can be avoidable.*

Sadly Pierce never experienced good seizure control like the happy stories I read about it. He was transported via ambulance, helicopter and jet to Lakeland Hospital, Tampa General Hospital, Shands, University of Florida, and numerous times to Miami Children’s Hospital. Pierce continued to decline. Our once active smiling toddler regressed before our eyes. After multiple medication attempts and other professional intervention it was obvious a drastic approach was needed to help our son.

The decision was tough but our medical team was encouraging us to try a different approach with Pierce. They wanted to administer a powerful drug called pentobarbital to slip our son into a sedated coma to give his brain rest from the constant seizures and try and break the cycle of these events. Machines would breathe for him, he would be at rest and this would give his brain time to heal. We were scared out of our minds but felt we had no choice. My husband David and I held each other in PICU and prayed, reminding ourselves that Pierce always persevered; he was our strong, brave boy.

5 days later Pierce came out of the coma seizure free, we were elated! Unfortunately this happiness lasted only 2 months when he had to be put back in the coma. As Pierce slipped into another deep sleep we expected a successful outcome like the one before. 7 months later Pierce was still in the coma and we had no answers.

When all of Pierce’s tests and biopsies came back normal we felt like we hit a brick wall. Nobody can tell us what happened to our active bright eyed toddler or where his life is heading. Pierce is turning 5 soon and we have no more answers than we had 2 years ago. Pierce now has a tracheotomy, a shunt (to relieve fluid from his brain) and his bones have been terribly compromised due to the coma. He cannot sit up without assistance; he doesn’t stand and cannot walk. We don’t know if Pierce can see; he doesn’t talk. Our Superman has a lot of hurdles to leap yet, but we have faith he will make progress.

The good news is that Pierce is stable and has been out of the hospital for 9 months. We relocated to Miami this year to be close to the hospital. Soon we will move back to Central Florida to be closer to our families and will continue working as a team to raise our family and help our son. This is definitely not the life we expected for Pierce or one we would wish on anyone. But it is our life – our path to lead Pierce in a way that allows him to maximize his potential and become a happy, healthy adult.

If your child or someone you know is suffering from uncontrolled seizures and is in need of direction and help, I urge you to contact your local Epilepsy chapter – www.epilepsyfla.org or contact Pat Dean, President of Florida’s Epilepsy foundation. Pat is also the coordinator of the Comprehensive Epilepsy Program at the Brain Institute located within Miami Children’s Hospital.

*Resources: One Hundred and one Questions and Answers about Epilepsy, Epilepsy Services of West Central Florida, Inc.

Epilepsy, Florida’s Hidden Healthcare Crisis