My wife gave birth to our son in an emergency c-section after she didn’t feel the baby moving the last day. We were right at the due date so he was full term. The doctors kept him in the NICU because of the traumatic birth and irregular lab results. During his stay the nurses really noticed he had a strange twitch in his hands and after an initial neurologist visit an MRI revealed the life altering truth – our baby had a stroke before he was born. My wife called me at work and told me. I work in healthcare and had never heard of this. We are really pretty confident people, but I felt helpless.
We discussed how to react almost being robotic looking for directions on what to do. There are not any real directions for something like this. Unsure if I should disclose my son’s trauma, I researched furiously on the subject. I grilled doctors on the matter. I wanted to know anything, everything, I am the boy’s father, it’s my job to protect him and guide him into the world. Between working, going to the hospital at night and my research I became exhausted. I then found CHASA. This community was a big help. I found reading other parents stories and columns as the guide I needed.
Eventually I began reaching out for help. Between the resources we found a great neurologist, hooked up with Early Childhood Intervention (ECI), and had our baby come home. Blake is a beautiful boy. He is funny and very engaged with everyone. Few ever guess he had a stroke. But his parents work with him tirelessly with our team of therapist. Initially we were told he may never use his right arm, or walk, or communicate. He does all of this on par with his age group now. Again I have to stress we do therapy every day. Blake had seizures for about two months daily. Like the stroke I beat every bush I could to learn everything I could about epilepsy. We found a great pediatric neurologist who specializes in epilepsy and I am happy to say we have been seizure free for almost 4 months. We give him his medicine on a very strict schedule and it seems to be working great.
Read more about selecting doctors and therapists for a child with a diagnosis of hemiplegia.
CHASA, the Children’s Hemiplegia and Stroke Association, was founded in 1996 and is a 501(c)(3) nonprofit organization. We are dedicated to improving the lives of children and young adults who have hemiplegia due to pediatric stroke or any cause.
