Life After Stroke: Anthony, Perinatal Stroke

On June 21st, 2013, I gave birth to my precious Anthony. I had a normal, healthy, textbook pregnancy. I didn’t have bad morning sickness, just slight nausea and sleepiness during the first 12 weeks. At 28 weeks I got food poisoning and went to the ER and was given Zofran and lots of fluid. That was the only bump in the road.  When Anthony arrived, he came out crying and perfect. We did all the normal health checks at the hospital, and everyone said he was perfect and healthy. He seemed it!

The morning of day four we were at home. He hadn’t eaten much the night before, and we noticed twitching. It would go from one arm to the other, then from one leg to the other, and even his head would twitch. I never imagined Anthony was having seizures. I had never heard of such a thing, and everyone at the hospital said he was perfect. Plus, when I thought of a seizure I did not think of little twitches; I thought of someone shaking uncontrollably.  We had even seen our pediatrician the day before because we had been concerned about some spots on his cheeks which the doctor said were fine. Our pediatrician reiterated that Anthony was a perfectly normal newborn. Thus, I only assumed the twitches were his little nervous system figuring things out. But then at one point I was holding him, and he began to twitch more often, and he stopped breathing. His lips turned blue and his eyes were blank. Though it only lasted a couple seconds, it seemed like an eternity. We had no idea what to do or what was happening, so we raced to our pediatrician who witnessed the twitches and told us to go right to the ER at Le Bonheur Children’s Hospital.

So away we went, Anthony still wouldn’t eat and was still twitching every few minutes. Our pediatrician called the hospital and told them we were on the way so as soon as we got there we were taken back where the nurses knew right away he was seizing. Everything after that was a blur and felt like I was having an out of body experience. How was this happening? My pregnancy was perfect, everyone said my baby was perfect, all my friends and family have perfect babies. Why us?

I watched as my tiny little infant was poked for blood tests, given a CT scan, an MRI, a spinal tap, an EEG and every other test you can imagine. I could hardly look after he was sedated and intubated. He looked completely lifeless. At this point I was hysterical. I learned quickly never to ask a nurse if someone is going to die, she couldn’t give us an answer. We were moved up to the PICU and on the way there a nurse was squeezing a bag connected to my tiny newborn, that was literally breathing for him. With each squeeze his little chest would go up and down. Once we were in the room things were quiet. Anthony was hooked up to a billion things. He was put on Keppra, an anti-seizure medicine, and monitored very closely to watch for swelling. The tests showed he had lost oxygen to the back of his brain that caused bleeding which in turn caused the seizures. The next afternoon we were told it was all caused by a neonatal ischemic stroke. I still didn’t really understand. As far as I knew strokes only happened to older people. I was NEVER told this could be a possibility for my baby, for ANY baby for that matter.

So again, we asked is he going to live? Is he going to be “normal”? Is he going to walk? Is he going to talk? Is he ever going to be able to do anything? When did this happen? How did this happen? They couldn’t answer any of those questions. Only time would tell. Finally, I asked, is there hope for him? Yes. Finally. I held onto faith and hope from then on out. As long as there was hope for my baby, I could breathe. I put all my worries and fears in Gods hands and held onto that tiny bit of hope that there was for Anthony.

On the third day in the hospital, the doctors began to take Anthony off the sedation and I was able to hold him again and see his little eyes open. Anthony looking at me was a huge deal. The damage on the back of his brain was in the occipital lobe, the part of his brain that controls vision. So, if this stroke were to affect him it would more than likely be his vision.

We were told by many doctors that babies brains have a lot of plasticity and damaged areas could basically “reroute”. This was wonderful news. We were able to leave the hospital after 6 days and told to take it one day at a time and just to see how he develops and reaches his milestones.  Anthony was kept on the anti-seizure medicine and over the next year we had many follow up appointments, 2 more EEGs, and a visit to a pediatric eye doctor who was amazed with how well all the nerves in his eyes looked after what he had been through. Anthony rolled over for the first time at 8 weeks old, crawled at 7 months and walked at 9 months.  He was always such a strong baby! He was taken off the seizure medicine at 14 months old and his neurologist told us he saw no need for any more follow up appointments.

Anthony has amazed me every day since he has been born. He can spot tiny airplanes way out in the distance that I can hardly see, when he says, “Mommy do you see that?” or “I see you Mommy!” little things like that remind me how fortunate we are, and how grateful we are that, praise God, he can see! Anthony will turn 5 this June. He loves to be outside and is so full of life. He is the silliest and happiest little boy! I still hold on to that hope and trust that God knows what He is doing and everything that has and will happen is for a reason.

I wish more people were aware of strokes in newborns and were educated on what to look for. I wish I had been. This is a topic that should be brought up in preparenting classes and in those “what to expect” books. I’ve learned that many children have strokes, but they don’t have symptoms, so parents do not realize it has happened until the child is older and they notice weakness in an arm or leg or hand preference before one year old. I’m so grateful for my healthy little boy. I pray that every other family that has gone through a similar experience knows that there is ALWAYS hope and that God has a plan for you.

One Response to “Life After Stroke: Anthony, Perinatal Stroke

  • Jamie Cousins
    3 months ago

    My daughter Camerons story is so similar. She had a stroke 24 hours after birth. She is almost 12 now and still having seizures. She is on meds twice daily. She faces challenges everyday and does not have full function of her right side but she is in 6th grade on track with her peers and a very happy little girl.

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