Life After Stroke: Annie, Perinatal Stroke

Our daughter, Annie was born at 28 weeks just 2lbs 9 oz.  At 5 days old we were told she had massive brain bleed (most likely a stroke during the delivery). She was in the NICU for 10 weeks and when we finally brought her home (on an apnea monitor and feeding tube), it was wonderful. Luckily since we knew about it at such an early age, we were able to start all her therapies very early. By 6 months old, she was getting either physical or occupational therapy 5x a week. We were told she may never walk or talk. She talked at 9 months old and started walking about 15 months old. We discovered that the CP affected the right side of her body – mostly her right hand. As Annie got older we discovered there were many different types of procedures that could help her. We tried some and decided against some. As Annie reached junior high she started running cross country and track and continued that all through high school on her school teams. She never finished last in any cross-country race. By junior high, she wore an AFO on her right leg only for running. She got her driver’s license at 16 and drives with a knob on the steering wheel. She is currently a freshman in college and is majoring in special education. She has done a lot of volunteer work during high school with children with special needs and feels this calling. She continues to have difficulty with fine motor skills with her right hand but seems to always find adaptations. She also continues to struggle with her self-confidence and feeling different than others.  

One thing we did that seemed very helpful to Annie was when she was starting junior high (this was before YouTube). I found a young woman who had CP with right side weakness like Annie. She lived in the area and was a teacher. We paid her to come over during a summer and teach Annie how to do things one handed or with a “helper” hand. She taught Annie things like how to put her hair in a ponytail, how to take a hot dish out of a high microwave, how to pour a pot of pasta in boiling water into a strainer, how to cut an apple, etc.  

My advice for parents just starting out is to go with your gut to find things that will work for your child. Don’t be afraid to disagree with a treatment because it would be too much a struggle for your family. You have to remember all your children and while the one with CP might need you more sometimes, we tried to make sure all of them felt our love. We tried to make Annie as independent as the rest of our children and in that we have been successful. Also know that not everything is going to go great or work perfectly. I would advise parents to keep a log of everything you have tried and the dates and doctors/therapists. I kept a journal with medical information, and just things that happened in our daily family life. It is nice to look back and see how far we have come. I would suggest getting your child into counseling around the junior high age as they struggle with fitting in and being different. Sometimes it takes them a lot longer to realize that everyone is different in some way and that there really is no “normal”. 

Annie is an amazing person and while watching her struggle over the years has been heartbreaking, she also has had so many successes that we try to celebrate and help her to see that the CP does not define her it’s just a small part of the wonderful young woman she is!

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