In my final weeks of my pregnancy with my daughter, I knew something was wrong. Call it mother’s intuition if you will. My active baby drastically slowed, and her strong kicks became weak pokes.
Despite these worries, there was no indication that anything was wrong with her. My water broke on my due date and a smooth labor and delivery followed. Though she did not cry right away, she looked fine. However, it became evident during our hospital stay that something was wrong. Molly was extremely lethargic. She had low muscle tone and her head tilted to the left. I held her limp body to my breast on our second night and sobbed. I told my husband something was wrong.
I was terrified she was going to die. Nobody had answers and after a couple days of observation, we were sent home with no answers. A follow up with our pediatrician gave me some hope. He told us Molly had benign congenital hypotonia. She had low muscle tone which required physical therapy. We began PT immediately.
We spent the following months taking Molly to PT at Children’s and having a therapist come to our home. Although Molly was making progress with her gross motor skills, it was slow. She was way behind in her developmental milestones. At almost 10 months old, we were referred to a neurologist. He ordered an MRI. It was during that time that my fear crept back in. I had a feeling the MRI would give answers. I wanted answers as to what caused her weakness and developmental delays. A mother’s worst fear is something happening to her child. What if this was something with a poor prognosis? I had spent the hours after her MRI in panic.
The morning after her MRI, her neurologist called. I saw the look on the nurse’s face when she walked in the room. I knew when she asked me if Molly had fallen they saw something. I couldn’t help but think something was terribly wrong. Her neurologist told me something that would completely shock me. I was not prepared for what he was going to tell me.
My daughter had a stroke in utero. As a nurse, I knew children could have strokes. I never heard of this happening before birth. After the initial shock wore off, I was filled with relief. There was relief in knowing we had an answer. There was relief in knowing Molly was healthy and everything we were doing for her was exactly what was recommended.
She continued with PT over the years. She was fitted for orthotics. She used a stander and eventually started using a walker. Her biggest struggle was balance. Throughall this she pushed, and she pushed hard. There was no giving up. And now, at seven, she has completely exceeded all of our expectations. She hasn’t used a walker in two years. She jumps. She runs. She climbs stairs. She continues to get stronger.
There is a lot of unknowns surrounding perinatal strokes. We don’t know what caused Molly’s stroke. We probably never will. I have met countless families of stroke survivors. Not one of them knows what caused their child’s stroke. In fact, many did not find out until months following their child’s birth.
I share this with you because May is Pediatric Stroke Awareness month. This includes awareness for perinatal stroke. Perinatal stroke is almost unheard of yet it happens more often than we think. Many children go months, sometimes years before it is discovered they had a stroke. It’s not something parents think of.
Most children have hemiplegia as a result. This is usually picked up when the child favors one side of their body. Hand preference as a baby is a red flag. Molly’s stroke resulted in ataxia. This simply means her balance and coordination is impaired. Unfortunately, some babies do not survive their stroke in utero. Some children have more health problems. Some don’t have any. Every individual is affected in different ways. With the lack of knowledge and unknowns, perinatal stroke awareness is vital.
Here’s what I do know. These children never give up. They strive to get stronger, every day. You will never hear my daughter complain or tell me she “can’t”. These simple things have inspired me. Molly has inspired countless people and she will continue to do so for the rest of her life.