Babies and strokes: Joey’s story

When you think of stroke, what comes to mind?

Perhaps an elderly parent or grandparent, or maybe someone hospitalized for brain injury.

But you probably don’t associate stroke, the interruption of the blood supply to any part of the brain, with a baby or a child.

Chandra Whitfield, of Mesa, learned just a few months ago that her son, Joey, suffered a stroke in-utero.

At first, Joey was an easy going, happy, typical baby, welcomed by his parents and brother Daniel (3 ½).

But at around 8 weeks, Chandra began noticing a few things about Joey that seemed different from her experience the first time around with Daniel. She mentioned her concerns to Joey’s pediatrician at the next well check.

The doctor diagnosed Joey with tortocollis, which can occur while a baby grows in the womb if the muscles or blood supply to the fetus’ neck become injured.

He prescribed some stretching exercises and suggested that Chandra put toys on on Joey’s left side to encourage him to turn his head.

That helped, but at four months, Chandra begin to notice that Joey wasn’t reaching for toys with both hands- just his right hand.

At his six month well check, he still didn’t seem to be using his left arm and hand – and Chandra decided to trust her “mommy gut” feeling that something wasn’t right.

She asked the pediatrician for a referral to a pediatric neurologist, just to rule out that anything was seriously wrong.

Finally, Chandra and her husband, Chris, received some tough news about their little boy.

Joey was diagnosed with left-sided hemiparesis (weakness on the left side of the body) due to a stroke in utero. An MRI followed and confirmed the diagnosis.

Since the diagnosis, Chandra says she feels “as if a fire has been ignited in me.” She began working to raise awareness about childhood stroke.

She and her family have walked in the Stroke Walk, a fundraising event.

She’s been selling purple awareness bracelets and donating the funds to the Children’s Hemiplegia and Stroke Association (CHASA), she’s got plans for a website, and volunteers for CHASA.

Chandra also sent a letter to Governor Jan Brewer requesting that May 7 be declared “Childhood Stroke Awareness Day.” Here are Chandra and Joey on the day just a couple of weeks ago when they received the news that the request was granted, and more.

Arizona now joins several other states in declaring May as Childhood Stroke Awareness Month. CHASA hopes to build a grassroots effort to add more states to the list.

Joey is a year old now and doing well. He works with a physical and occupational therapist to help strengthen his left side. The testing and therapy will continue, but so will Chandra’s will to get the word out to others to raise awareness—and to grow a community. Because what Chandra says has helped the most is the connection she’s made with other parents of children who have suffered stroke in-utero.

Watch Chandra tell Joey’s story on RAK Video and hear from Dr. Jeremy Timothy, Pediatric Neurology, Cardon Children’s Medical Center about in-utero stroke.

You’ll see Joey motor around the RAK offices and take a snack break to show off the progress he’s making with his left side:

Chandra says that no matter what struggles are down the road, she knows her son will overcome them because he has more determination than she’s ever seen in anyone.

And, judging by the way Joey’s mom has rocketed to action to raise awareness about childhood stroke in just the past few months, I’m guessing the apple doesn’t fall so far from the tree.

For more information on Chandra’s quest, or to order a Childhood Stroke Awareness bracelet, send an email to infantstrokeawareness@gmail.com.

Find more resources on the Kids Have Strokes site and at the Pediatric Stroke Network.

9 responses to “Babies and strokes: Joey’s story

  1. Susan McAlpin

    What a wonderful story! Thank you so much for all of the hard work toward raising awareness! I am the mother of a 3 1/2 year old “true fetal stroke” survivor. My daughter was having seizures at 30 weeks gestation after I experienced a placental abruption. We were unaware of her condition, but my Drs documented the movements and delivered her via c-section because of some of the inconsistencies they noticed. Lucky for us they decided to be cautious. Knowing that she had been in utero for 8 1/2 weeks because of that documentation proved very helpful later on. Charlotte started OT & PT 2 weeks after she was born. She is weaker on the left side, along with a few fairly common stroke survivor (adults and children) effects. My husband and I, along with our oldest, Addie (she was 4 when Charlotte was born), have had to become advocates and find lack of awareness tends to be our biggest obstacle. Even medical professionals have paused when they hear that Charlotte had a stroke in-utero. It can make life a little more difficult when you have to explain that, yes, it does happen. Followed by a million questions about it while you are asking for assistance. Even tougher is when you try and offer info about what makes stroke different than other conditions and you are ignored. Awareness only helps. Pediatric stroke is far more common than people realize. Starting in-utero. Imagine how much more research money would be out there for pediatric stroke if people knew about it, nevermind if people realized how much could be learned from these kids about the “fantastic plastic brain”! Keep up the good work, you are making a difference in my daughter’s life and I thank you. All the way from NH.

  2. This awareness campaign is great. When my baby boy was 3 weeks old he started having seizures every ten minutes. I had never even heard of a baby having a stroke so I was shocked to find out that my baby had had two of them. One in utero and one at 3 weeks. He was flown out to Tucson Medical Center where we spent five days in ICU. We didn’t know what to expect, at one point I said that if he ever smiled at me it would be a beautiful miracle for me. He smiled at me the night we got out of the hospital. He is our own little miracle. He is 2 now and running around and copying everything his 3 older sibling do. He struggles a bit with his right hand, but like Joey he is determined to not let it stop him from doing anything, he figures out a way. Thanks you!!!

  3. My son also had a stroke in utero which resulted in an ICH, intracranial hemorrhage. His stroke was due to NAIT, neonatal alloimmune thrombocytpoenia. It is an incompatibility between mom and baby’s platelet types. It occurs in 1 in 1000 births. For more info go to http://www.naitbabies.org

  4. I would just like to say well done to you for raising awareness. I live in the uk and was not aware of infant strokes until recently. My now 19 week old started having seizures at 3 weeks which we now know we’re a result of a stroke. The seizures were happening every hour lasting 15 mins at least, for 12 hours. They were finally stopped with an epilepsy drug. He is still on this and is undergoing further tests to determine his future. The US websites have been very helpful and informative and helped me through these last few very tough weeks.
    Thank you.

    • Sarah Sloman

      Hi Naomi, you’re the first person I’ve found from the UK that’s had something similar…my son had many siezures and a stroke at 3 days old (he’s now 7monhs). How is your medical support, have you found any similar support sites here?

  5. I love your warrior mom approach. My son Jakoby had two strokes at birth. He had 32 seizures afterwards which led to a quick diagnosis. He has been recieving therapy since he was a month old and though he does have some right sided focal seizures and right sided hemiparesis he is my miracle child! He amazes me every day and inspires me to do great things. I am in the process of requesting a proclamation in the state of Maine declaring the month of may pediatric stroke awareness month and will be hosting a walk to raise awareness. His younger cousin (younger by six hours) also suffered a massive stroke at birth and was not diagnosed until much later. I want to reach out and help families in Maine become educated and help prevent such diagnosis coming to late to make major therapy differences. Your and inspiring mom !

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