Joey's Journey
Friday, May 6, 2011
By: Chandra Whitfield

Survivor

My youngest son, Joey, who is 13 months old, is an in utero stroke survivor. Before his diagnosis, I never knew that anything like this was possible. He is the strongest person I know and has so much determination... he inspires me!

Joey was born on April 5, 2010. No compilations at birth, just a hard time learning to latch on, which was rectified after a couple of weeks. He was such an easy going, happy, and laid back little guy who would cuddle all day long! At about 8 weeks I started noticing that he wouldn't turn his head to the left. Of course I mentioned it to his pediatrician at his 12-week check, and he diagnosed him with tortocollis. He gave us some stretches to do and told me to put toys that would grab his attention on his left side to help get him to turn his head. After about a month of doing that, he started getting better at it.

Shortly after that, I'd say around 4 months, I started noticing that he was not reaching for toys with both hands - just with his right. He would tuck his left arm/hand down to his side everytime we put him in the car seat or bouncer. I mentioned this at one of Joey's appointments when he was sick, and the doctor told me not to worry about it. He'd grow out of it.

Finally, at his 6-month check, when he was still having a hard time turning his head to the left, and still not using his left arm/hand as he should be, I insisted that the doctor take me seriously. He noticed that his left arm and leg were tight - and decided to send us to a pediatric neurologist just to be safe.

On November 18, when Joey was just 7.5 months old, we received devastating news. The neurologist told us that she believed Joey had suffered a stroke in utero (sometime before birth) and that is why he was not using his left side like he should be. Chris and I just looked at each other, in disbelief. Did she really just tell us that our beautiful, perfect, happy baby boy had suffered a stroke? Before he was even born? Was this some sort of dream? We never knew this was possible! She also diagnosed him with left-sided hemiparesis (weakness on the left side of the body) due to the stroke. She had us schedule an MRI.

December came, and we went for the MRI. I was a mess, to say the least. They had to put Joey under general anesthesia to perform the MRI/MRA to make sure he was completely still so they could get a good picture of his brain, head, neck and all the vessels. We went in the room while they "put him under"... I held his hand while they put the mask on and he peacefully went to sleep. I lost it... thank goodness they waited until he was asleep and we were out of the room to put the IV in. Off we went to the waiting room. It was the longest hour and 45 minutes of my life. Finally they came out and said we could go back and see him, that he was starting to wake up. He woke up, and immediately had a bottle, he is such a trooper! After about half an hour of making sure he kept the fluids down, we were OK to go home. Three days later I got a call that all appeared to be OK with the MRI and the doctor would review them at our follow-up in a few weeks. They still believed he had a stroke but the damage wasn't that bad.

January 11, 2011 was our follow up with the neurologist. She showed me the MRI and then the part that was "damaged". When the radiologist looked at it , he didn't see what the neurologist did... I was so upset. There were several white spots on the right thalamus, where the stroke occurred. From what I have heard this isn't a very common spot for strokes to occur. She called it a "thalamic stroke". The basic thalamus function in the brain is to process and relay movement and sensory information. It can be called the relay station of the body, which takes in sensory information from different parts of the body and passes it on to the cerebral cortex. A major role of the thalamus is related to the motor systems of the body. Filtering the signals is an important thalamus function and any changes in this filtering may show physiological effects. Since the damage was done to the right side of his brain, that is why the left side is affected. The hemiparesis and CP were caused by the stroke. When I asked her about speech, memory, etc. we were told to "wait and see"... it is impossible to predict which problems they will or will not have.

The doctor believes his stroke was caused by two factors. Joey had a single umbilical artery (2 vessels instead of 3) and I also have high blood pressure and developed Pre-eclampsia, and then eclampsia. Both of those factors could have cut off his oxygen supply for a moment, and caused the stroke. The doctor went ahead and authorized an array of blood tests to make sure that there were no other factors that could have caused the stroke (ie: sickle cell anemia, clotting disorders). We just recently found out that, thankfully, they all came back ok!

Joey is 13 months old now and doing well. We do PT an OT once a week, and will be adding speech therapy to his plan soon. He uses his left hand more and more each day, without needing to be reminded! His leg seems to be the most affected. His left leg is weak, and now that he is walking, we are noticing that his right foot is having some issues as well. He falls about every 5-6 steps, but gets right back up and tries again! His therapists think he is going to need some type of orthotic to help him be able to walk better and build up his endurance.

Joey is a happy, smiley, loving, funny, and crazy little boy who will NOT let anything slow him down! Though we face many challenges along the way, I know that we will all do nothing but grow from this experience. Each new thing he does is so exciting and continues to give me hope! He makes me stronger - amazing that such a little person can do such a big thing! More awareness needs to be brought to infant, childhood and perinatal (before birth) stroke.

Read more about pediatric stroke.