Families Coping with Infant Stroke began after our younger son, Evan, suffered a stroke in utero. For the first few months of Evan’s life, we were uninterested in learning too much about his disability for fear that we would discover information too difficult to handle. After our little guy began smiling, moving, and interacting, we realized he was just another child, and we set out to discover all we could about how to help him. In the process, we developed this website as a way to tell our story, connect with others, and provide information to those who need it. Please browse the site, leave a comment, and join this and other support communities for pediatric stroke survivors and their families.
Contact:
Email – infantstroke@gmail.com
Facebook – Families Coping with Infant Stroke
Twitter – @InfantStroke
I would love to join this site and have my blog linked here or be able to submit my family’s story. I hope to hear from you soon.
My son is now 6 and suffered a massive prenatal stroke that affected 1/4 of his brain. We only found out about it when he started having seizures at 3 days old. We were told worst case scenerio he’d be blind in a wheelchair and our best case was cerebal palsy with a limp and non-working arm. (that and he’d never appreciate the arts or music given the right sided stroke)
I’m happy to report that he is virtually symptom free. He is our most musical child, he draws better than his siblings, he runs without limping, uses both hands well, is cognitively grade level and very loving little boy. The only way one would notice any symptoms is that his little thumb just doens’t hold things as well on his left hand. I’ll take it! I just wanted to post our story, along with pics, so that others can see that even with massive strokes, outcomes can be incredible. He’s been seizure free since 7 days old, no meds, he was ‘graduated’ from OT and PT at 2 years old, and had CIMT at 1.5 years for a few weeks. We may work with him on his thumb weakness, but honestly, he’s now just a normal little boy.
Contact me if you’d like pics and our full story. Thanks and keep the faith.