Posted on July 16th, 2012 by Admin
Editor's Note: Eric J. is a patient/caregiver who submitted the following essay as part of the Mayo Clinic Center for Social Media Patient, Caregiver Scholarship Contest. To vote, simply use the Facebook "Like" or Twitter "Tweet" buttons at the bottom of each post to share or leave a positive comment. The top vote-getters will be finalists.
When Zenith was two, he seized for over an hour, the electrical storm in his brain raging unabated. This was a small community hospital, and the emergency department physicians, good though they were, didn’t know that to break Zenith’s seizure they needed to increase the dosage of his medication. As Zenith’s father, I watched helplessly that night. This was the doctors’ realm, I thought; they were the experts, they were in charge, and there was little or nothing for me to do.
That was eleven years ago. Today, I know there were things that I should have done to help my son. In contrast to the timid, hands-off approach I took that night, I understand now that as Zenith’s parent, I am the leader of his healthcare team and Zenith’s most potent advocate. Each parent of a kid with chronic health issues travels his own path. My path led me first to become a paramedic. And then an EMS educator, teaching other paramedics how to better manage seizures. And ultimately to work to empower other parents so that they will be able to manage their child’s medical emergencies.
Once I began to take responsibility for Zenith’s emergency care, I discovered that if an emergency treatment plan had been in place for Zenith, guiding his care when seizures repeatedly sent him to the hospital, he might not have seized for an hour that evening. But his neurologist, a world-class expert, never suggested a plan until I knew enough to step forward and ask for one. According to the American Academy of Pediatrics, all children with chronic health issues need an emergency treatment plan, developed as a partnership between the child’s specialist, PCP and family. The plan ensures appropriate care not only in the ED, but also in the back of the ambulance and in the school nurse’s office. Few parents have any idea.
After that night eleven years ago, I learned that I could have pushed to have Zenith transferred to the children’s hospital, where the system is designed to address the needs of kids with chronic health issues, instead of staying in the local community hospital.
Empowering parents does more than serve the child. It gives parents hope, by giving them a real measure of control over their child’s healthcare. My goal is to help parents climb the steep learning curve to becoming strong advocates for their children. To let them know that asking tough questions is their appropriate role, and doesn't make them disruptive troublemakers.
To help parents be better prepared for medical emergencies, I created an article “Emergency Treatment Plans for Kids with Chronic or Special Health Issues” published on the (now defunct) Google knol platform. And in my role as a paramedic, I created the page “Ten Things You Can Do to Save a Child” which includes information to help parents prepare for medical emergencies.
While sharing knowledge by publishing articles is helpful, it’s not enough. My voice is but one. So many parents have similar stories to share and knowledge to impart. Truly empowering communication must be many-to-many, and it must be multi-directional. We each have something to offer, something to learn. Social media naturally encourages the “audience” to participate; to add their voices to the conversation. It is a give and take; it allows the speaker to hear the reactions and to reply. And it can occasionally go viral, re-tweeting far beyond its original audience.
One of the replies I received to my article said it all: “I wish I had the opportunity to read this article when my son was first diagnosed with Epilepsy. It would have saved me some grief.” Parents of children with chronic health issues need to hear this message, and share their experiences with others. If honored with this scholarship, I will use the skills I develop to broaden the discussion.
Zenith continues to suffer seizures, but is a happy, smiling child who takes joy in everything he does. You can say hello to him at http://www.facebook.com/zenithjaeger.
Tags: advocate, Caregiver scholarships, parent, Patient scholarships
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