As a young nurse working in the Neurological Intensive Care Unit, I cared for patients who had various types of seizures. At the time, I never thought I would be the mother who would care for my own medically fragile son who would battle life-threatening seizures and disabilities throughout his life.
We have two children. Rob is our second child and was born in 1995. After his birth, I thought we had the perfect all-American family, which included a son and a daughter. However, seven months after Rob’s birth, he had his first seizure. After his test results came back, we were told by his neurologist that “often infants do this and he would probably not ever have another seizure.”
Around 9 months of age, Rob started to have more frequent and longer seizures. Unfortunately, his various prescribed medications did not help him. His seizures grew worse, but he was still developmentally on track for his age.
Then, around one year of age, Rob began to have seizures that lasted anywhere from 30–75 minutes long that caused his development to severely slow down. The only thing that would stop his seizures was to call 911 so he could receive emergency medical treatment.
During Rob’s first year and a half, the Pediatric Intensive Care Unit would intubate and place him on a ventilator five times. The exhaustion, fear and worry that my husband and I had was indescribable. If Rob was going to have a chance to live, we had to fight for his survival. The future of our son depended on it.
The many specialists in our community and around the region consistently told us that Rob’s seizures were of “unknown etiology,” but that he would probably outgrow them. My maternal intuition and medical background knew that whatever his condition was, it was more serious than what we were being told, and I suspected Rob was not going to outgrow it.
An Answer and a Plan
When Rob was 10 years old, his seizures were still under poor control and he had suffered from severe speech and cognitive delays. We thought we had exhausted all avenues of treatments. My husband and I advocated for our son to get yet another opinion. Much to our surprise, we were referred to a neurologist at Texas Children’s Hospital in Houston, Texas.
After we discussed with the neurologist the treatments and medications Rob had been on, his seizure history and a review of all of his test results, the neurologist believed he knew our son’s diagnosis. He said it was “Severe Myoclonic Epilepsy in Infancy,” also known as Dravet syndrome.
Rob was only the 75th child in the country to be diagnosed with Dravet syndrome. My husband and I felt relieved that we had an answer, but we were also told that Dravet syndrome is the worst seizure disorder there is.
Because Dravet syndrome is rare, the medical research on the condition was scarce and only a few neurologists knew about it. The neurologist told me that besides making sure our son received the best care, we should also educate and raise awareness to help others with Dravet syndrome, with the hope that patients would be diagnosed sooner and receive more appropriate treatment.
Rob is on a special diet for seizures called the Ketogenic Diet; has had a Vagal Nerve Stimulator implanted; and has been prescribed various medications to help control his seizures. In addition, Rob is on a machine at night for sleep apnea that gives him continuous positive airway pressure to assist his breathing. He needs to have oxygen ready at all times while he sleeps, because his seizures are often so severe, his oxygen level drops quickly to critical levels.
As exhausted as I sometimes get, awake night after night helping him through multiple seizures, Rob has taught me more about life than I ever learned in nursing school. He has taught me the real meaning of compassion and caring.
Compassion Through Education
I took the neurologist’s advice to educate and raise awareness about Dravet syndrome. When I joined the ProMedica Toledo Children’s Hospital team as the Pediatric and PICU educator, I felt that I belonged there. After all, this was the same team of nurses and physicians that had saved my son’s life multiple times. I knew it was my time to help them learn something very important that most of them had not experienced.
I knew as a nurse and a mother of a child who had battled a chronic life threatening genetic syndrome the importance that he be treated with the same respect as other typical children. I also knew the importance as a parent that the health care team listens to families with the respect they deserve. The family is the true advocate for their children.
I educate my orientees about the importance of listening to patients and families and what the values of Patient Family Centered Care are: Respect and Dignity, Information Sharing, Participation and Collaboration. You must respect what all families tell you, especially those who have children with disabilities and other chronic health conditions. I consider myself fortunate to have a life experience that most of them have not experienced. This has made me a stronger person both personally and professionally.
I have spoken to many families of children with seizures to help give them support, and answer their questions. I explain to each of them that they must be their child’s advocate. They must have a questioning attitude and search for answers no matter how many miles or length of time it takes.
The Beyond the Frame exhibit helps educate the community that these children are all special and have so much in life to teach us. They did not ask for the disability given to them, but each of them carries a beautiful smile and as Rob has, and a positive outlook on life.
He has taught us that every day must be enjoyed. Viewing the Beyond the Frame at ProMedica Toledo Children’s Hospital, and seeing the beauty of each child should make you quickly realize who the real heroes are. I hope everyone will enjoy Beyond the Frame and understand the deeper meaning it presents.
As our son has told my husband, his sister and me many times throughout his life, “Don’t give up. Try again!”
Brenda Brooks is the Pediatric and PICU educator at ProMedica Toledo Children’s Hospital. She is the proud mother of Rob Brooks who lives with Dravet syndrome, and is a participant in Beyond the Frame, a permanent photography exhibit in the lobby at Toledo Children’s. To connect with Brenda and Rob, as well as other families in the project, please use #BeyondTheFrame.