My son Heggie had his first seizure when he was 8 months old. It started when we heard a hiccupping sound coming from the baby monitor. Not knowing what was happening to our son, we rushed him by ambulance to the nearest children’s hospital. I was petrified, and that day became the worst day of my life. Heggie seized for an hour and a half, leaving the left side of his body temporarily paralyzed. The doctors told me there was an 80% chance it would not happen again, but I had a strong intuition it would—and it did. Heggie was diagnosed with Dravet syndrome 4 months later.
Heggie’s seizures from age 1 to 4 years were mostly status seizures. Rescue medication was not able to stop the seizures, and Heggie usually had to be placed in a medically induced coma for the seizure to end. He had countless ICU visits and endured what no child should have to endure nor what any parent should have to witness. This first 3 years of Heggie’s life became a very dark period in my life. I wasn’t prepared for that diagnosis and the challenges we faced then. I wondered what the future held for our son, but I held close to the promise from other Dravet mothers that things would get better. Since then, there has been much prayer and time to process and gain a level of acceptance of our son’s circumstance. I wish I had been able to give myself more hope during that time based on what I know now.
Despite our challenging moments early on, we had no idea that we were in a place of great learning. My husband and I were grateful for our diverse medical backgrounds that helped in creating protocols, organizing medical documentation, and relationship building with the medical team. We were also grateful for the priceless knowledge and experience from other Dravet families that helped us protect our son. We began to understand Heggie’s triggers and limitations, and were able to provide the safest environment for him. We also learned that every second counts when preparing and treating Heggie during this critical time in his life, and we became Heggie’s biggest advocate for emergency and expanded medical care.
“We learned that every second counts when preparing and treating Heggie.”
As with any rare disease, there was a learning curve with the medical staff, and we found out quickly that it was up to us as parents to provoke, encourage, and confirm all education and awareness around the treatment of our child. This was from the emergency room physicians to our pediatrician. When Heggie was seizing, there was no time for education on what Dravet syndrome was and how to treat it. During this time, we made relationships with our medical staff, and training with the director of the medical system took place for all physicians and residents in the Emergency Department.
Through our experiences, we have also been able to work with our healthcare providers to create and personalize a “Face Sheet” and “Emergency Protocol” to serve as important tools to protect Heggie in emergencies. We carry these, along with pamphlets about Dravet syndrome, with us at all times in a red folder located in our emergency bag. We were also able to get Heggie’s protocol placed on the emergency room board for quick access. The “Face Sheet”—a common medical term describing the sheet on the face or front of a chart—serves to brief a medical professional during a seizure on Heggie’s medications, weight, ketogenic diet, contraindications and allergies, Heggie’s personal severity in seizures, and the seriousness of Dravet syndrome. Listing contraindicated medications is important, as many anticonvulsants typically used for a seizure in an emergency room have the opposite effect with our children, which, unfortunately, we experienced first-hand many times before receiving Heggie’s diagnosis. The protocol also gives detailed instruction to the nurses, paramedics, and the Emergency Department. Each document is printed on our neurology group’s letterhead and signed by our neurologist, with their contact information. This is important due to the type of medications and quantity required, typically, to stop a seizure of a Dravet child. This minimizes any perception that the parents created these documents independent of a medical professional.
My friend and mentor through all this, Michelle, told me the minute I lose my grounding emotionally is when I lose my power to fight for my child. This was the most difficult thing for my husband and I to learn, and I still do not do this perfectly but I continue to try. Having a “Face Sheet” and “Emergency Protocol” gives me guidance and confidence I need when in such a frightening situation. It also ensures that the emergency personnel have accurate information and clear direction on what they need to do so that no time is lost for our sweet boy. This will also give insight to the medical team about your knowledge and commitment as a parent to your precious child.
It is inhumane for any of us as parents to have to endure the terror, grief, and trauma that we have to experience with our children. It is even more inhumane that our children have to suffer from this illness. Calming the storm emotionally and seeing the light can be difficult at times. My vision and dreams were changed for my family, my son, and for me. I remind myself grieving is ok, but this road is divine and there is much joy to be found in seeing the world through my son’s eyes…and not my own.
“I remind myself grieving is ok but this road is divine, and there is much joy to be found in seeing the world through my son’s eyes…and not my own.”
Heggie’s hurdles are great, but there are countless joys in the small steps toward overcoming them. The best part is watching his precious face when he knows he’s got it. He is a testimony to so many people who struggle. Heggie sees kindness and happiness, but not the torments of Dravet or his limitations. There are so many who watch our lives and find power in their own life through our trials. I believe that this is not a meaningless walk, and we were chosen specifically for this battle, and our children for their warrior hearts.
“I believe that this is not a meaningless walk, and we were chosen specifically for this battle, and our children for their warrior hearts.”
What I have experienced and will always continue to learn is that my child is going to be exactly who he is to be—not what I expect or dreamt he would be. I believe this is true whether our children are well or challenged. I find it easy to view our children’s lives through the lens of what we desire for them or by trying to recreate our own life experiences for them. These expectations can break you. So I continue to have awareness in setting aside my own expectations for Heggie with the knowledge that this may not be the life I originally envisioned for my sweet boy, but that doesn’t make it any less; it is just different. And it’s not my journey—it’s his. I’m here to make his journey the best it can be and celebrate each step taken with a whole lot of love.
I have also learned that there has to be self-care and care for a marriage no matter how well we deal with our circumstances. We were given a large challenge, and I am reminded daily that care starts within me and is then passed on to everyone else. I find this to be true for most Dravet mothers I speak with, and you never master this…you just keep trying.
To view a sample “Face Sheet” template on this site, please click here
Resource Hub Caregiver Tools section.
Work with your physician and healthcare team when creating and revising your child's Face Sheet and Emergency Protocol to ensure it is thorough and up to date.