Sickle Cell Disease and Stroke in Children: What Parents Should Know

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September is National Sickle Cell Awareness Month, a time dedicated to increasing understanding of sickle cell disease and supporting affected individuals and families. But this conversation matters year-round.

Here at Mamas and Coffee® and through Stroke Talks, I want to highlight another reason to pay attention to sickle cell disease: the connection between sickle cell disease and stroke, particularly in children.

When most of us think about stroke, we think about adults. Maybe an older parent or grandparent. We don’t necessarily think about a child having a stroke.

But children can have strokes, too.

And for children living with sickle cell disease, understanding that risk is especially important.

Sickle Cell Disease Can Increase a Child’s Risk of Stroke

Sickle cell disease, often referred to as SCD, is an inherited blood disorder that affects red blood cells. With sickle cell disease, misshapen or “sickled” red blood cells can clog blood vessels and cause serious complications, including damage to blood vessels in the brain and stroke.

Here’s the statistic that really caught my attention:

Children with sickle cell disease have a stroke risk more than 100 times higher than children without sickle cell disease.

That’s something worth knowing.

Both ischemic strokes, which are caused by a blockage in blood flow, and hemorrhagic strokes, which involve bleeding in or around the brain, can occur in people with sickle cell disease. According to the American Stroke Association, ischemic strokes are more common in children with SCD.

And Then There Are Silent Strokes

This is another part of the conversation that I think is incredibly important.

Not every stroke comes with the outward warning signs we’re taught to recognize.

Children with sickle cell disease can experience what are often called silent strokes, or silent injuries to the brain. According to the American Stroke Association, these may occur in up to 39% of children with sickle cell disease by age 18.

A silent stroke may not cause obvious physical signs such as weakness in an arm or leg. Instead, a brain MRI can show the injury.

But “silent” doesn’t mean insignificant.

These injuries can affect thinking, learning and decision-making. They can also increase the risk of future strokes.

As a mom, that’s the part that makes me stop and say:

We need to know this.

Awareness Gives Us the Opportunity to Ask Questions

One thing I continue to learn through Stroke Talks is just how many different causes, risk factors and circumstances can surround a stroke. That’s why awareness matters!!!

For families of children with sickle cell disease, stroke screening can be an important part of their healthcare conversations.

The American Stroke Association discusses using transcranial Doppler ultrasound, also called TCD or a Sickle Stroke Screen, to help evaluate stroke risk. Experts recommend TCD screening for children ages 2 through 16 with sickle cell anemia.

If your child has sickle cell disease, this isn’t about reading something online and trying to figure everything out yourself. It’s about having information that helps you start a conversation with your child’s healthcare team.

Ask questions.

Learn which screenings are recommended for your child.

Know the signs of stroke.

And continue advocating for your child’s health.

Yes, Children Can Have Strokes

This is something I want us to continue talking about.

Stroke does not belong to one age group.

Strokes can occur in toddlers, children, and teenagers. Unfortunately, signs of stroke can sometimes be missed in children simply because people don’t realize a child can have one.

That’s one of the reasons pediatric stroke awareness matters so much.

The American Stroke Association recommends remembering B.E. F.A.S.T. when recognizing possible stroke symptoms:

B — Balance Loss
Sudden loss of balance or coordination.

E — Eye/Vision Changes
Sudden blurred vision, double vision or loss of sight.

F — Face Drooping
One side of the face droops or feels numb.

A — Arm Weakness
One arm becomes weak or numb.

S — Speech Difficulty
Speech becomes slurred or difficult to understand.

T — Time to Call 911
If you notice these symptoms, call 911 immediately.

Children may also experience other sudden symptoms, including severe headache, confusion, numbness, difficulty walking, vision problems, or seizures.

During National Sickle Cell Awareness Month, I encourage you to take a few minutes to learn more about sickle cell disease and its connection to stroke. But even if you’re reading this in January, April, July, or any other month of the year, the information still matters.

And here’s my MomJonz two cents before you go…

We don’t know what we don’t know.

I certainly don’t walk around thinking about every possible thing that could happen to me or my children. Goodness, we’d drive ourselves crazy doing that, but I DO believe in learning, asking questions, and sharing information when I come across something that could help another person.

That’s one of the reasons Stroke Talks is so important to me.

Before my own stroke, there was a whole lot about stroke that I didn’t know. And the more conversations I have and the more stories I hear, the more I realize how much there still is for ALL of us to learn.

So no, I don’t want you leaving this article scared.

That’s never the goal.

I want you leaving a little more informed than you were five minutes ago.

Maybe you’ll share what you learned with another mama, friend, family member or caregiver. Because you never know when a little knowledge might make a BIG difference.

Know the signs. Ask the questions. Share what you learn. And keep taking care of YOU and the people you love. ❤️

Learn More About Sickle Cell Disease and Stroke

For more information about sickle cell disease and pediatric stroke risk, including screening and stroke warning signs, visit the American Stroke Association.

Read: Sickle Cell Disease and Pediatric Stroke Risk

This article is for educational and awareness purposes only and is not a substitute for medical advice. Talk with your healthcare provider or your child’s healthcare team about individual health concerns, screening, and treatment.

Thank you for helping more stroke survivors, families, and caregivers know they are not alone.

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Stroke Talks creates space for honest survivor stories, supportive virtual & in-person events, and helpful stroke awareness resources. If this article encouraged you, helped you feel understood, or taught you something new, consider buying Stroke Talks a coffee. Every cup helps me continue these conversations and keep our community connected.

Thank you for helping more stroke survivors, families and caregivers know they are not alone.

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