As registered nurses who have worked at Nicklaus Children’s Hospital for more than 25 years, we are honored to have provided care for a great many children, ranging from newborns to young adults. Always we have been in the role of care providers, until September 2020, when our then 2-year-old son Jayden experienced his first seizure. Suddenly we found ourselves for the first time seeking out the services of the hospital where we have dedicated our careers.
We brought Jayden to Nicklaus Children’s not knowing what would happen. It was a very worrisome time because we understood that epilepsy can be very complex and the cause of seizures can vary widely. We immediately met the wonderful Dr. Ann Hyslop, a pediatric neurologist, who talked to us at length and was very reassuring.
A video electroencephalogram (VEEG) showed Jayden had abnormal movement in his brain. Dr. Hyslop was able to identify a medication to help quell the seizures. From October 2020 through early January 2021, Jayden was seizure-free and attending preschool. Everything seemed back to normal.
A Rare Diagnosis
Meanwhile, a genetic test revealed that Jayden had a rare genetic mutation known as NPRL3 that was linked to his focal seizures. We met with Dr. Parul Jayakar, geneticist, who relayed that Jayden is the first patient at Nicklaus Children’s to be diagnosed with this rare genetic condition. There is not a lot of data related to this gene mutation, so we felt relieved to have a cause but also a bit anxious.
The Seizures Return
On January 12, 2021, Jayden’s seizures returned. This time, he was experiencing 12 to13 seizures per day. We were heartbroken and devastated. It seems that Jayden had either experienced a growth spurt or was fighting a cold and his medication was no longer working. Regardless, the seizures were back.
Most of them were occurring at night and as a result, he was not sleeping much. Jayden had just turned 3 and would say, “I’m sorry mommy” while he was seizing.
It was heartbreaking seeing Jayden experience these recurrent seizures. As parents, we were completely devastated. When other anticonvulsants did not stop the seizures, we were advised to prepare for a surgical evaluation in March of 2021.
Surgery Offers New Hope
During the evaluation, we were fortunate to meet other neurologists including Dr. Matt Lallas and Dr. Trevor Resnick. We felt reassured to have so many professionals weighing in related to Jayden’s care. Dr. Hyslop and the neurology team presented our son’s case to the hospital’s Epilepsy Conference group, where Dr. John Ragheb, pediatric neurosurgeon, learned of Jayden’s journey.
Soon after, we received a phone call from Dr. Hyslop letting us know Jayden was in fact a candidate for surgery. The surgery would consist of a right frontal craniotomy to remove the cortical dysplasia that was causing his seizures.
A Surgical and Support Dream Team
When we met our neurosurgeon Dr. Ragheb, we were in awe. He is brilliant, humble, caring and has a wonderful sense of humor that helped us to manage our fears. He is Jayden’s real-life superhero. The surgical date chosen was June 21, 2021. Looking back on that morning, we have no idea where we found the strength to hand over our child to the neurosurgical team. We were advised to prepare for a full day of surgery. We just prayed and had lots of support from our family and friends. We had asked everyone we knew to wear purple in Jayden’s name that day and to pray for him. We definitely felt the love throughout the hospital. I work in the Neonatal Intensive Care Unit and the entire staff wore purple that day to support our Jayden. My husband (Oscar) works at the Nicklaus Children’s West Kendall Urgent Care Center and everyone there sent us love, prayers, support, and photos of themselves wearing purple with the hashtags #jaydenstrong💪 , #yougotthisjayden💜 for epilepsy awareness.
#Jaydenstrong
The love and prayers were overwhelming and so appreciated. By 6 p.m. on the day of surgery, we were able to see Jayden in recovery. We had a rough night, but by day three, everything started getting better. Jayden’s head bandage was removed by our favorite seizure unit nurse practitioner Aileen Rodriguez, who has been by our side since September 2020. We have grown to love her as if she is family. We couldn’t have done this without the entire team mentioned here. Thank you to all for giving our son Jayden a chance for a normal life. He is Jayden Strong. He looks great and feels great. We recently met with Dr. Ragheb for our first post-surgery follow-up appointment and it went great. Many thumbs up pictures were taken with Jayden and his hero Dr. Ragheb. Surgery was a complete success and our little one has had no seizures since. He will, of course, continue to be monitored, but we thank everyone for the continued prayers and support. We could not be more proud to be Nicklaus Children’s nurses.
Dayse and Oscar Delgado
