The other day, I got a lovely photo card from my neighbors, the Browns. It was sort of like those family-photo Christmas cards that people send, only this one was to remind us that May is Pediatric Stroke Awareness Month. Not something you’d probably think about unless you or someone close to you has been affected by a pediatric stroke.
Knowing some of what my friend Susan Brown has gone through with her son JT (along with her husband Aaron and their younger daughter Caitlin), I thought it might be nice to have her share her experience with you. Here’s her story. — Susan
Since my birthday is May 1st, I have always had something to celebrate during the month of May.
On May 5, 2007, my husband, Aaron, co-hosted a Cinco de Mayo Surprise Party to celebrate to my 30th birthday.
Eight days later, I celebrated my first Mother’s Day when my son, JT, was 6 months old.
On May 28, Aaron, JT and I moved from our Cape Cod in the city (Oakley) to our colonial in the suburbs (West Chester).
On May 31, the month-long celebration was over. As I sat with JT at the pediatrician’s office, I tried to explain to the doctor that something was wrong with JT’s right arm. I didn’t think his arm was broken, but I knew it wasn’t right. If his pacifier was next to his right hand, he would reach across his body and pick it up with this left hand. His right hand was in a fist more than his left hand. When he rolled to the left side, his right arm would get stuck.
The doctor gave us three referrals and we spent June and July of 2007 at various appointments: occupational therapy (OT) evaluation, physical therapy (PT) evaluation and neurology. We started Early Intervention/Help Me Grow services through our county and attend weekly OT and PT appointments.
In July, we attended an appointment at the Brachial Plexus Clinic at Cincinnati Children’s Hospital. My husband and I were hoping we would get some answers at this appointment, and we did. We were both shocked when the doctor told us that she suspected that JT had a stroke.
On July 20, the doctor’s suspicions were confirmed when an MRI revealed that JT had suffered massive a left hemisphere in utero stroke.
The last five years have definitely been a journey. We have been so fortunate to meet so many caring individuals on the way–occupational therapists, physical therapists, speech-language pathologists, doctors, teachers and teaching assistants–that have had a profound impact on JT’s life. We are so proud of JT’s determination and perseverance.
We now have some thing new to celebrate during the month of May: May is Pediatric Stroke Awareness Month.
— Susan Brown
Childhood stroke occurs in approximately 1 in 2,700 infants and 11 in 100,000 children (ages 1 month to 19 years) each year. Children frequently have significant long-term disabilities after a perinatal stroke, including cognitive and sensory impairments, epilepsy, visual and behavioral difficulties, and cerebral palsy. Early identification and treatment is key to success for little stroke survivors.
How can you help?
Volunteer, Donate, Advocate: The Children’s Hemiplegia and Stroke Association, is a 501(c)(3) non-profit organization, dedicated to improving the quality of life for children and families affected by infant and childhood stroke.