Benjamin: Perinatal Stroke, Alabama

The world’s most handsome little boy was born May 22, 2013. Benjamin was the pride and joy of his whole family. He was happy, healthy and all seemed well.  Three days later, we went home excited to begin our life as a family of 4!

Soon after he came home, my husband and I noticed some strange behaviors that we had never experienced with our older child. He was very fussy and extremely hard to soothe. Despite my endless breast feeding, he wasn’t gaining weight or growing. He also struggled to latch on to the breast and bottle. His right leg and his arm would twitch as if he was being tickled. In addition, he would never look towards the right, or respond to loud noises on the right side.

We brought all these concerns to his doctor, but we didn’t know pediatricians usually have limited experience with pediatric stroke. Our doctor didn’t know that the signs and symptoms Benjamin was experiencing could be an indication of a perinatal stroke. Our doctor instead diagnosed Benjamin as having severe colic, milk protein allergies, and reflux. Unfortunately, despite trying formula after formula, he could not keep anything down and continued to not gain weight. We were stumped and so was his pediatrician.

Then one day, when Benjamin was around 3 months old, his grandmother noticed that when she placed her finger in his right hand he would no longer grasp it. When he began to play with toys he would never use his right hand. Occasionally, for no apparent reason, his right arm and leg would tremble as if being tickled. Those were our first signs.

We were finally referred to a pediatric neurologist when Benjamin was 4 months old. A month later he had an MRI, and it was confirmed. Benjamin had suffered a left middle cerebral artery stroke at birth and was diagnosed as having right hemiparesis, cerebral palsy, and later epilepsy. Waiting to find out what was wrong with our baby, seemed to be the longest month of my husband and my life. To say the least, we were terrified.

We are now three years into our journey and Benjamin has made tremendous progress. Despite being told by his physicians that he would probably never walk or talk, we persisted with therapy and researched every type of method to help him.

I can now say he is an incredible almost 4-year-old who not only walks but runs! He never stops talking and has conversations with everyone he meets.

His epilepsy has given us the most challenges and he will be having a functional hemispherectomy in May to stop his seizures. But we know Benjamin will again persevere and show epilepsy and his doctors who’s boss!!

Note: Benjamin’s hemispherectomy on May 2, 2017 was successful and he has shown a lot of progress!

 

Help us #MakeMayMatter for kids impacted by stroke! Share this story and #BeAVoice for pediatric stroke.

2 Responses to “Benjamin: Perinatal Stroke, Alabama

  • Anastasia M.
    2 years ago

    My son had a left perinatal stroke as well which was diagnosed at 18 months old! He is currently in OT PT and Speech therapies, but his speech is very limited (around 15-18 month old level). I do have a couple of questions… to what extent does your son have difficulty speaking, and if potty trained do you have any pointers?

  • Kristine Herrin
    2 years ago

    Sending you love from Alaska. Our son Brodie had stroke at 7months with seizures starting soon after. At 2.5 he had a Functional Hemispherectomy. He will be 2 yrs post-op on June 11 and he is doing Great. He still does SP, OR and PT, but we keep seeing improvements.
    I know it was probably a hard decision for you to do the surgery, it was for us. But it was the best thing we could have done for him.
    I hope for a quick recovery for your son. Give that boy a Big hug from all of us out there.

    I’m also sending a Big Hug from me to you❣❣❣

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