We'll clarify the title in a moment...
Noah Walker was born on October 1, 2010 after a great and uneventful pregnancy. We'll never forget that first, loud cry as he entered the world, nor the nurse calling out his weight - a whopping 9 lbs 9 ozs! He was our happy, healthy, bouncing (big) little baby boy and we couldn't have been happier. Our stay at the hospital was uneventful relative to other new births and we made the slow car-ride home a couple of days later right on schedule. Everything was right in the world as we celebrated Noah's birth with family, friends and each other.
We noticed early on - when Noah was about 6 weeks old - that he seemed to be favoring the left side of his body. He seemed to turn his head to the left side and he really only brought his left hand to his mouth. We started joking that he would be a lefty...perhaps the missing piece of the Red Sox bullpen. He did move his right arm some and being first parents, we didn't think anything was too unusual. At his 2 month pediatrician check-up we brought up the fact that he seemed to be "left dominant." She did a quick exam and didn't seem to be too concerned. She told us to keep an eye on it and off we went. We both felt reassured after that appointment and almost silly for worrying about it.
As Noah began to grow and started developing, it became clear that something wasn't right. He started reaching for objects and we noticed that he would only reach for things with his left hand. If a toy was easier for him to reach with his right hand he would still reach across his body with his left to grab it. He often kept is right hand clenched in a fist - particularly when engaging in an activity. We just figured the right would eventually catch up, but it never seemed to. At his 4 month pediatrician appointment we brought it up again. Again she did an exam and she thought everything looked fine. She told us we could contact Early Intervention to get an evaluation and she would refer us to a neurologist if we liked. We thought it would be a good idea, just to get everything "checked out."
Finally on March 1st - Noah's 5 month birthday - we were able to see the neurologist. She examined Noah and agreed with us that something was wrong. She insisted that we schedule an MRI for Noah in order to "rule out a perinatal insult or stroke". In the back of our minds, we had always worried that Noah might have a serious issue, but it was surreal to hear those words out loud.
One month later, on the morning of April 1st, our alarms went off at 5:30am. The ground was covered with 2 inches of snow as we scrambled around getting ready to take Noah to Children’s Hospital for his MRI. We were terrified and as usual, Noah was happy and smiling all along the way. We got through the MRI – Noah was a trooper – and were told to call our neurologist later that day as she should have the results that afternoon. It would be the longest 6 hours of our lives. A little after 3pm on April 1st, 2011 the neurologist called – she was hesitant to relay the results over the phone, but ultimately accommodated our pleads – and our perfect, happy, healthy baby-boy Noah was officially diagnosed with having had a pediatric stroke.
It’s has certainly been a long month for all of us, but we have learned a lot. Noah has been through a myriad of additional tests to make sure he is otherwise healthy…and thankfully he is. He is at no greater risk to have another stroke than anyone else. The actual stroke itself was – for lack of a better term – a fluke. Nothing anyone could have done would have changed it…a tiny blood clot (the size of a grain of sand) took a wrong turn and blocked an artery within his brain. A second neurologist that we met with recently told us that this occurs in approximately 1 in 4,000 births. They believe many more blood clots stemming from the placenta occur in babies right around the time of birth, but most head off into different parts of the body and simply dissolve. Those unlucky few that have it make a wrong turn towards the brain are the only ones that these clots seem to cause issues for. For us a case of very bad luck.
We are unsure what the future will hold, but we are very optimistic. We got the diagnosis earlier than most and we are ready to start moving forward. Noah technically has hemiplegic cerebral palsy – which sounds scary – but by definition is simply weakness on the right side of his body because of the stroke. He has just started physical therapy (PT) and will start occupational therapy (OT) hopefully next week. He is the same little boy that we have known since birth – he has no idea that anything is wrong, nor does he care. He continues to laugh, smile and brighten each and every one of our days. We know this journey will be different than we had imagined, but we are so thankful for our amazing little boy. He has a smile that is infectious and a happy, peaceful demeanor that draws in everyone that he meets. He is our inspiration and a survivor and we cannot imagine our lives any differently.
Now about this streaking… May is Pediatric Stroke Awareness month and in honor of pediatric stroke survivors the Children’s Hemiplegia and Stroke Association (CHASA) is doing a “streaking” campaign. Pediatric stroke survivors work hard every day to use their affected sides. In honor of these survivors we have decided to “streak” or do something every day in the month of May. Brad has decided he will run every day and I will run, walk or ride my bike for at least 20 minutes a day. We will also update this blog daily with Noah’s progress. You can check out the streaking website at:
www.streakfor pediatricstroke.org
If you are up to it we would love for you to join us in our “streaking” journey in honor of Noah and other pediatric stroke survivors….
