Jayden: Perinatal Stroke, South Carolina

I was just 35 weeks pregnant and not ready to give birth to my second child. When the midwife told me to hop off her examining table and head straight to the birthing center, reality sunk in quickly!

It was a quick delivery, too quick…100% natural quick. I felt like they were rushing me to get the baby out but didn’t want me to know anything was wrong. When our son Jayden (JJ) was finally born, he was so perfect, pink and beautiful. So perfect that he got a perfect Apgar Score. Never in anyone wildest dreams would we believe anything was wrong.

They sent us home with this perfect little bundle and our new journey as a family of 4 began. That first month was so wonderful. Jayden was an amazing baby, slept and latched well for breast feeding. Although, as a second-time mom, I found it somewhat odd that he never really cried. Then as we got closer to 6 weeks, I noticed he’d never turn his head to the right. I thought maybe everything was just placed so he didn’t have to. I started moving furniture around to see if that would help.

When I finally took JJ in to see his pediatrician, I was shocked when he said he believed Jayden had “brachial plexus of the shoulder”. He said Jayden had dislocated his shoulder during delivery, and that all I had to do was stretch his neck and by a year old it would heal itself. Sure enough, after two weeks of doing the neck stretches, we saw an amazing difference. JJ was moving his neck in both directions just fine.

Soon after that, as Jayden started to swat at toys, we started to notice he would only reach for his dangly toys with his left hand. Back to the doctor we went. This time I showed him how JJ wasn’t using his right hand to reach or swat. The next words out of the doctor’s mouth did not sit well with me. He actually said that I was “looking for something to be wrong with my child and that Jayden was just going to be left handed”. As a preschool director at the time, I knew what he had told me was NOT true, and I became quite upset. At that point, my emotions got the best of me and I made it very clear to the doctor that I was not looking for anything wrong with my child but was noticing he was only using one hand and my older child never did this. I couldn’t believe that a medical professional was trying to convince me that my child showing a hand preference at 3 months was normal!

I proceeded to beg him to give me a referral to see an orthopedic doctor to have him checked out. To calm me down he did, extremely reluctantly. We finally got an appointment with the specialist when JJ was 5 months old. The team of four doctors took x-rays of JJ’s right shoulder and concluded that he did not have Brachial Plexus at all! He was clearly showing hand preference and sent us home with a solution of getting him into physical therapy.

We quickly found out there was an extremely long waiting list to get into PT. But with the help of some amazing people, we were able to get him in sooner and from 6-9 months JJ was going to physical and occupational therapy for brachial plexus. Although were now told he did not have this. Developmental delays were now very evident as JJ didn’t even sit up by himself yet. At this point, I had an ominous feeling something was very, very wrong. I recall spending hours on Google, researching pointing toes and startle reflex, and it continuously led to the words “Cerebral Palsy”. Our little world was crumbling quickly.

Jayden went to therapy for a couple of months with no results at all. At that point, the therapist working with him suggested we look into a hospital that had a Brachial Plexus clinic. This clinic had an OT professor, and she really wanted the team of neurologists to see Jayden. We decided to make the 2 and a half-hour drive and meet with those doctors. Unfortunately, they also couldn’t figure out what was wrong with Jayden as his x-rays showed no issues. They said that cognitively JJ was very interactive, but developmentally he was extremely delayed. They suggested that Jayden needed to see a pediatric neurologist.

As the doctors walked away from us, my husband and I just stared at each other in disbelief that we STILL had no answers. That’s when I felt a divine intervention. The quiet OT in the corner of the room said she had been working with children for many years and that she knew exactly who could help us. She said she had to make some calls to get us in to see him, but sure enough within a week we met with the most incredible pediatric neurologist. He saw JJ and quickly told us we needed to get an MRI done immediately.

After 10 months of tears and confusion and literally not getting any answers, we finally felt that someone was not only listening to us, but truly wanted to find what was causing Jayden’s issues. We returned a week later, and waited as they took my baby back for an MRI.  It was the longest 3 hours of our lives. Helplessness isn’t even the right word to describe the feeling. Between many tears and even more prayers, they called us back to get JJ, who was slowly coming off the anesthesia. The nurse said that the good news was if it was something like cancer or a tumor we would have had to stay at the hospital. But since it wasn’t, we could go home and wait for someone to call us. At that point, after the day we just endured, I had had enough. After months of no answers, and after over ten doctors not telling us what was wrong with our precious little boy, I had reached my limit.

I marched right across the campus and demanded to see the pediatric neurologist! I refused to leave until we got answers. They took us in, sat us down and pulled up the results of the MRI. A computer screen with black and white blobs, and the words, “its an infarct of the brain” “ischemic stroke” “stroke in utero” “cerebral palsy” “may never walk or talk” came flooding in. Shock hit. Terror hit. Our world crashed before our eyes. So we picked up that not so perfect by medical standards, but perfect to us baby boy, and headed home.

No information, no step by step guide on what to do next, nothing but a follow up appointment and a prescription to increase therapeutic services to 6 hours a week. But after 11 months of fighting to have someone listen, we finally had our answer. We had a pediatric stroke SURVIVOR and we made a vow that day that this diagnosis would never defeat Jayden as a person nor would it defeat our family. We never looked back.

Everyday feels like a new discovery to this diagnosis and everyday as Jayden grows stronger, so do we. But I’ll never forget how it felt to be dismissed by doctors who we entrusted with the life of our son. If anything, it’s completely changed my perspective on the medical field, and has actually pushed me to follow more of my own gut instinct vs. just listening to what a medical professional tells us is their opinion. I strongly believe that medical professionals should never dismiss parent’s intuition. We may not be as medically versed as they are, but we know our children. Its truly disheartening how many children’s lives and families’ lives are affected daily, when all we need is someone to truly listen and respect our concerns.

Luckily for us, we have built an amazing team around Jayden’s recovery and though we face challenges daily, we feel extremely confident that everyone involved works together for Jayden’s best interest. We truly all work as a team to make things as great as they can be for his future.

 

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

One Response to “Jayden: Perinatal Stroke, South Carolina

  • Mickaella
    3 years ago

    My concerns about my daughter were also routinely dismissed by her pediatrician. It wasn’t until she was almost 3 that we got her in to see the best pediatric orthopedist in our area that we got her diagnosis of Right Spastic Hemiplegia and later confirmed through MRI that she’d suffered a stroke in utero, probably in the first trimester. It amazes me how many parents have a similar story.

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