Today I learned that Perinatal Stroke effects 1 in 1500 babies. This is our story of Emily’s journey to recovery from both an ischemic stroke some time in my third trimester of pregnancy and subsequent hemorrhagic stroke after birth. The following paragraph was originally written for a health care professional so it is a little impersonal. But it gives a good summary of Em’s medical history.
Emily’s medical background
Emily was born on November 13, 2011. She is now 18 months old. I had uncomplicated pregnancy with her and ultrasounds during pregnancy should her to be healthy. I went in to labor with her at 39 weeks and 5 days. Labor lasted 4 hours and the birth was uncomplicated. Once born, Emily presented with low muscle tone and was not moving her left arm for a few minutes. Her 1 minute APGAR score was 6, having lost points for low tone. By 10 minutes her APGAR as 9 and she had transitioned well. She ate well, slept well and was calm and happy for 3 days. On the third day she woke up crying inconsolably and then stopped breathing. She was rushed to the ER after CPR and her CT scans and MRI showed a large bleed in her right cerebellum. She experienced seizures the first week of hospitalization that were then controlled. It was shown that the bleed had stopped. She spent 26 days in the ICU and was released. When she was 10 months old, a brain angiogram revealed that she had a blood clot during pregnancy that her brain had grown new vasculature around to rerouted blood flow. So, then we knew the cause of the bleed at birth was the original clot from her first stroke in utero.
At home she had a NasoGastric tube for one week while learning to take a bottle. She eventually relearned to breast feed after about 3 weeks. She had and continues to have very low muscle tone. She can move all of her limbs, but all in a dysfunctional way. At 12 months of age, she was officially diagnosed with quadriplegic cerebral palsy by her physiatrist and neurologist. She also has (or had) some Cortical Vision Impairment from the bleed. We know this has gotten better but we are not sure by how much.
Emily has been in physical therapy since she was 4 months old and is still very low toned and can not fully hold up her head, sit or crawl. Although, head control is starting to come more quickly now. She can push up on her hands in the prone position and roll from her stomach to her back. She cannot roll from her back to her stomach on the flat floor but can do so on an incline. She can grab items with her right and left hands but her grip is very weak. She has recently learned to grab food from her tray and put it in her mouth and to use a fork to put food in her mouth. She is curious about the world around her and likes to grab and play with toys. Her favorite activity is reading books. She really enjoys turning the pages.
Emily is not able to speak any words yet but does make many babbling consonant and vowel sounds including baba, mama, ooo, hi, goo, gaa etc. Emily responds to her name when she is called.
That’s my quick summary. I hope to have to make significant edits and updates to it soon!