E was born full-term after an uneventful pregnancy and a ridiculously long (64 hr) labor. Although undeniably stressed from delivery, and needing some resuscitation, she seemed to make a complete recovery and didn’t even have to spend time in the NICU. We were so relieved.
Then at around 3 months old, E started batting at toys with her left hand, while her right hand stayed mostly in a little fist. We mentioned this to our family physician at her wellness check, and she referred us to the Children’s Center for assessment. I spent hours on the internet researching early handedness in infants. Again and again, hemiplegic cerebral palsy came up. When she was 6 months old, we were seen by the developmental pediatrician at the Children’s Center. She told us that due to E’s difficult delivery, she had likely suffered a brachial plexus injury and would recover with therapy. I could hardly bear to ask… “so… it’s not cerebral palsy?” And the answer was “no, definitely not”. We were so relieved and started an hour of combined PT and OT weekly. Still, down in my heart, I knew that this was not something that was going to just “go away”.
When she was 9 months old, an MRI demonstrated that E had suffered a stroke sometime around the time of her birth (termed a perinatal stroke). Her official diagnosis is “presumed perinatal ischemic stroke” (PPIS) as well as “right hemiparetic cerebral palsy”. Stroke is one of the leading causes of cerebral palsy.
And so began our journey with hemiplegic cerebral palsy.
It was crushing to find out that our tiny daughter had a stroke. Strokes seemed like something older adults have – not children, and certainly not babies!
I definitely had to grieve. I was angry for a long time. I had a lot of what if’s and should haves…. particularly I wish I would have pushed harder for a c-section, and I agonized over labor & delivery mismanagement. We will never know if that would have spared E this struggle.
(But that is one of the harsh realities of this life, isn’t it? We wish to control – life, death, and everything in between. “In our day and age”, these things “shouldn’t happen”. But “in our day and age”, *many* things DO happen which are undesirable. Even though we live in an advanced society, when it comes right down to it, there are many things that are out of our control… Why? I believe we know deep down that we were made for something better – for the happy and healthy “utopia” we all yearn for and try to achieve through various means. God describes this as having put “eternity in [our] hearts”. Our world is a fallen one, because we have inherited a fallen nature – collectively we have chosen to follow our own ways instead of God’s ways… And in a fallen world, bad things happen to good people and bad people alike. God does not promise to spare us the harsh realities of life in a fallen world. We look around the globe at countless examples. The collective decisions of every individual affects each one of us – and people do not always choose kindness. God doesn’t promise to spare us, but He does promise to carry us through. Not only that, but God willingly took on these harsh realities and came and lived among us, as one of us – He truly understands. We can have hope for today, and hope for tomorrow, through Him.)
It is possible that E had the stroke in-utero before labor began (or at some point soon after delivery – she did cry a lot the first night). I asked neurologists and therapists, read scientific papers online, and borrowed neurology textbooks from the university library to try to figure out exactly where her stroke was, what it meant, and how it could have happened. I had a lot of questions but there were no answers as to why. Neither of us had any risk factors (other than the long labor and occiput posterior- sunnyside – presentation).
It was really difficult for me to be with other moms with young children. When I was just with E, her sweetness and my excitement in her every accomplishment was wonderful. Because her milestones were hard won, we relished in each small accomplishment! Being around other young children, however, made her motor delays stand out like a neon sign to me. I struggled with post-partum depression for a long time (mainly from other complications that I had had during delivery), and found that playdates or mom’s groups would push me over the edge and I would end up crying in a bathroom somewhere.
I did come to terms with E’s stroke on some level, eventually (probably when she was around 2.5 yrs old). This helped me to be able to move on with therapy for her – to be able to pursue more than just what was offered conventionally.
What did help me reach a measure of acceptance was releasing the guilt, regret, and control… There must be a reason why God allowed E’s stroke to occur. Perhaps it is to make her, and our whole family, more sensitive to those with disabilities (which it has! And there certainly are more children who struggle with one thing or another than I would have thought before!). Perhaps it is to meet people we otherwise never would have (which has certainly happened!). Perhaps it is just because bad things do happen to good people in a fallen world- including babies. Some things we will never know on this side of eternity, and must trust in our heavenly Father just as E places her trust in us as her parents.
“And we know that for those who love God all things work together for good, for those who are called according to his purpose.” Romans 8:28
Perinatal stroke claims the lives of many babies. We are certainly fortunate that E’s stroke was relatively small and that she is a survivor. For that we are truly thankful!!!
A FEW FACTS ABOUT PEDIATRIC STROKE
- Perinatal, neonatal, infant and childhood stroke are some of the most common causes of hemiplegia or hemiparesis in children.
- Perinatal arterial ischemic stroke is the most common form of stroke in children and it occurs in 1 in every 2800 live births.
- Sixty percent of these children have specific symptoms such as recurrent focal seizures in the first three days of life.
- However, forty percent of children with early stroke do not have symptoms and the stroke is recognized later with delays in movement, development, learning, or seizures.
- Children often receive occupational and physical therapies for decades to help them learn functional skills of daily living and increase movement if they’re experiencing motor difficulties.
(FROM THE CHILDREN’S HEMIPLEGIA AND STROKE ASSOCIATION WEBSITE http://www.chasa.org/)
Difficult experiences in life often challenge us to reflect on and examine our lives more deeply than we otherwise would. Yes, there is grief, and anger, and regret, and frustration. But there is also courage, and hope, and compassion, and purpose. If you are struggling with purpose, and an emptiness inside, then it might be possible that God is challenging you right now, through this struggle, about your life’s calling. Perhaps all the struggles I have faced simply had their purpose in leading YOU here – to my story. Perhaps God allowed all these things to happen in my life so that YOU might be offered this chance to know Him. If so, one heart won, and one soul saved for eternity is worth all the sacrifice, pain, and challenge. YOU are worth it.
I strongly believe that in this life, nothing happens by accident or coincidence – things aren’t determined by fate or luck (good or bad). I believe there is an overarching story – a beautiful picture of love, loss, and redemption – and that there is Someone who cares and is in control. You are already a part of this story, whether you know or believe it or not. While the end of the story has already been written, your own part lays open before you for you to choose your ultimate destiny. Perhaps our coinciding struggles have been finely orchestrated to lead you to this one moment: The Bridge to God.
“Praise be to the God and Father of our Lord Jesus Christ. The Father of compassion, the God of all comfort, who comforts us in all our troubles so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow into our lives, so also should the comfort of Christ overflow.” (2 Corinthians 1:3-5)