Stories about: sickle cell disease

Stroke in kids: What’s different?

pediatric stroke
Illustration: Fawn Gracey

Every May, we recognize National Stroke Awareness Month to honor everyone who has experienced a stroke — and to raise awareness of this disease. That awareness is especially important for pediatric stroke, which is more common than you might imagine. “Stroke occurs throughout childhood, from birth through 18 years of age, and more commonly than people think,” says Dr. Michael Rivkin, co-director of the Stroke and Cerebrovascular Center at Boston Children’s Hospital. “In fact, among newborns, its occurrence is very nearly that of its occurrence in older adults.” Here, he shares four facts parents need to know about pediatric stroke — and how it differs from that in adults.

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Kids aren’t immune.

Despite the misconception that stroke is a disease of the elderly, anyone can experience one — including infants and children. Babies can even have strokes while they are still in their mother’s womb. All told, strokes occur in an estimated 1 in 2,500 live births and affect nearly 11 out of 100,000 children under age 18 every year. The risk of having one is highest in a child’s first year of life, particularly during the few weeks before and after birth.

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Kids can have different risk factors.

Most of us are familiar with the factors that can raise the risk of stroke in adults, such as cardiovascular disease, an irregular heartbeat, obesity, diabetes and smoking. But children are more likely to experience a stroke for different reasons, says Dr. Rivkin. Common risk factors for pediatric stroke include congenital heart disease, blood vessel abnormalities (such as arterial dissection and moyamoya), disorders that increase the blood’s tendency to clot (such as sickle cell disease), infection or inflammation.

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Kids can have different symptoms.

In adults, we’ve been taught to look for the most common warning signs — classic symptoms such as facial drooping, arm weakness or numbness and speech difficulties. Although these signs can also be used to help identify the problem in children, kids can exhibit other symptoms as well. Newborns and young children may be extremely sleepy, use only one side of their body and experience seizures. In children and teenagers, severe headaches, vomiting, dizziness and trouble with balance and coordination, as well as seizures, may signal a stroke.

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Kids tend to recover better.

Because children’s brains are still developing, they tend to recover better than many adults. Indeed, the problems that result from the stroke (such as weakness and numbness) can often improve over time with therapy. A team approach to pediatric stroke — including child neurologists, hematologists, neurosurgeons, interventional and neuroradiologists, physical and occupational therapists, speech and language therapists, neuropsychologists, educational specialists, and physical and rehabilitation medicine physicians — is optimal. “We understand that a multidisciplinary and intensive approach to care of children with stroke provides the best route to recovery,” says Dr. Rivkin.

Learn about the Stroke and Cerebrovascular Center.

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Annelizabeth’s story: Care that feels like home, close to home

sickle cell WalthamWhen you’re 5, it’s nice to have a place that feels like a second home. Where there are lots of hugs. And songs. And games. And you can curl up and watch “Frozen,” your favorite movie.

For Annelizabeth Jean-Baptiste, a spunky Waltham kindergartener, that place is Boston Children’s Hospital at Waltham.

Annelizabeth, or Annie (but never Anna, she says), first came to Boston Children’s at Waltham two weeks after she was born.

Her mother Elcie wasn’t expecting that her fourth child would need special care. “It was a difficult pregnancy. I was very excited and relieved when she was born.” But that sense of relief turned to surprise shortly after Annelizabeth’s birth.

She tells me, ‘Mommy, I’m a big girl. I’ll go by myself,’ when it’s time for her blood draw.

Elcie had undergone prenatal screening for sickle cell disease, and her baby had tested negative.

After Annelizabeth was born, her first test for the disease was positive. Her second test also came back positive, and Annelizabeth’s pediatrician referred the newborn to Dr. Rachael Grace, a hematologist at Boston Children’s.

“Dr. Grace explained what sickle cell disease meant. I hadn’t known before,” says Elcie. Grace sees patients twice weekly at Boston Children’s at Waltham, allowing the Jean-Baptistes to stay close to home for Annelizabeth’s ongoing sickle cell care.

Charleen Colleran-Lombardi, a social worker at Boston Children’s at Waltham, is an important part of Annelizabeth’s care team, too. She’s been by Elcie’s side since Annelizabeth’s diagnosis was confirmed, helping Elcie and her husband Maguerre manage their daughter’s care.

“We started learning everything we could about sickle cell disease. It’s so hard when they are little babies and can’t tell you they are in pain,” says Elcie.

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From Bermuda to Boston for surgery to protect the brain of a boy with sickle cell disease

Calvin_Steede_kneeling_in_suitCalvin Steede, who lives in Bermuda, will never forget the day in 2011 when he saw the movie “Winnie the Pooh” with his mother and sister. The film ended, and suddenly the boy who likes to draw and play soccer couldn’t put on his backpack. His arms had stopped working. He couldn’t stand, and soon he couldn’t talk.

Calvin, now 11, had suffered a minor stroke, a complication of sickle cell disease and the first step of a journey that would take him to Dana-Farber/Boston Children’s Cancer and Blood Disorders Center for minimally invasive surgery to protect his brain from future strokes.

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Sickle Cell Awareness Day

It’s World Sickle Cell Awareness Day, so today we bring back the story of Maryam Idan, a young Iraqi girl and sickle cell disease (SCD) survivor. We say “survivor” because last year Maryam had a stem cell transplant—the only cure currently available for SCD, and a complicated and risky one at that. Read on to learn more about Maryam’s story and life.

Maryam and her parents

Born in Baghdad in 2002 without access to advanced medical care, Maryam Idan stood little chance of receiving anything more than the most basic treatment for her sickle cell disease (SCD). By the time Maryam was a baby, her parents, Basim and Janin Al-Zoubaidi, had already lost three of their children to the blood disorder, so they knew the condition’s telltale signs. “When she started showing the same symptoms as her siblings, we immediately thought the worst,” says her father. “We knew there was treatment in America, but we had no idea if we would have the means to get there.”

An inherited disease, SCD causes a child’s red blood cells to malform and become stiff, taking on the shape of a sickle, like the letter C. These abnormally shaped blood cells can stick together and interrupt healthy blood flow throughout the body. This can cause a host of problems that can affect nearly every major organ, but it affects every patient differently. “Some kids don’t have pain or complications until they’re teens, while others suffer strokes and extreme pain and need blood transfusions when they are very young,” says Leslie Lehmann MD, director of the Stem Cell Transplant Program at Dana-Farber/Children’s Hospital Cancer Center (DFCHCC).

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