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When James was born via emergency c-section at around 12:30 am on August 29th, 2009, we knew almost immediately that something was wrong. He was alive and breathing, but he didn’t cry and didn’t seem to have a suck/swallow reflex. We got to see him just briefly before he was whisked away to the NICU for further evaluation and testing.
In the NICU he was hit with a barrage of tests trying to determine what was wrong with James and what we were dealing with. On August 30th, an EEG was done on his brain and an MRI was ordered to look for normal brain function. On September 1st the results of both came back. The EEG results were fine, but the MRI showed that James might have had little in utero strokes early in the pregnancy.
“Wait…what?” “James had a stroke?” Those were the first questions out of our mouths when we were told the news. We didn’t know that it was possible for a fetus to have a stroke, but apparently it is.
You might have noticed that I said, “James might have had strokes early in the pregnancy”. Might being the key word. In conversations between neurologists, they weren’t totally 100% sure that they were strokes because they happened so long ago. Regardless if they were strokes or not, we set out to find out as much about strokes as we could.
It became apparent pretty quickly that there was not much information out there about in utero stokes. Most of the articles and information we came across was about strokes in adults. We did, however, come across one site, kidshavestrokes.org, that did a fairly decent job of discussing strokes in kids, both after they are born, and when they are still in the womb. That was back in 2009, and it appears that that site no longer exists. That website now (in 2020) redirects to chasa.org, which also has some really good info on pediatric stroke.
What I intend to do with this page is to answer many of the questions we had when we found out James had a stroke in utero, and also to answer many of the other common questions that we didn’t think to ask. If you found this page through a search because your little one had a stroke either before or after birth, hopefully this will answer many of your questions. I will include links to other sites that I gathered the answers from if you are interested in reading more detailed information.
Before I get started with the questions and answers, I just want to note that the information I have provided here is focused specifically on pediatric stroke. When most people hear the word “stroke”, they think of an adult. Although strokes are more common in adults, they do still happen in kids, both before and after birth. And while there are some similarities between strokes in kids and strokes in adults, particularly with regards to the symptoms and treatment of a stroke.
Because this is a rather long article, I wanted to try to make it a bit easier on you. You can either read (or skim) through this entire article from top to bottom, or you can click on one of the questions below and be automatically taken to the answer for that question. If there is an additional question you would like to have answered, simply click the back button on your browser and you will come back to the list of questions.
How common are strokes in infants and children?
What are the different types of stroke?
What causes strokes? What are the risk factors?
What are the signs and symptoms of a pediatric stroke?`
What kinds of problems can a stroke cause?
What is a pediatric stroke?
A pediatric stroke is similar to a stroke in an adult. Both cases involve blood supply to the brain. The Internet Stroke Center describes a stroke as “a sudden interruption in the blood supply of the brain. Most strokes are caused by an abrupt blockage of arteries leading to the brain (ischemic stroke). Other strokes are caused by bleeding into brain tissue when a blood vessel bursts (hemorrhagic stroke). Because stroke occurs rapidly and requires immediate treatment, stroke is also called a brain attack. When the symptoms of a stroke last only a short time (less than an hour), this is called a transient ischemic attack (TIA) or mini-stroke.”
The American Stroke Association says that a “stroke is a disease that affects the arteries leading to and within the brain. It is the No. 5 cause of death and a leading cause of disability in the United States. A stroke occurs when a blood vessel that carries oxygen and nutrients to the brain is either blocked by a clot or bursts (or ruptures). When that happens, part of the brain cannot get the blood (and oxygen) it needs, so it and brain cells die.”
Johns Hopkins Medicine talks specifically about pediatric stroke when it says “as with adults, without prompt and appropriate treatment, stroke in children can be life threatening and requires immediate medical attention. Stroke is among the top 10 causes of death in children. Pediatric stroke can also cause neurologic disability, with a risk of permanent long-term cognitive and motor impairment. IF YOU SUSPECT YOUR CHILD IS HAVING A STROKE, CALL 911 IMMEDIATELY.”
It was mentioned that if James did have a stroke, it would have been an ischemic stroke, where the blood flow to the brain got blocked. It was discovered through one of the blood tests he had while in the NICU that James has Factor V Leiden, which is a blood clotting disorder in which there is an increased tendency to form abnormal blood clots.
I don’t recall it ever being mentioned, but is it possible that the Factor V Leiden caused a blood clot that traveled to his brain and caused a stroke? I’m not a doctor and have zero medical training, but it sounds logical, doesn’t it?
Unfortunately in James case, the stroke was in utero and there was no way of us knowing that he was having a stroke. When we found out about the stroke after he was born, it was too late. The damage had already been done.
How common are strokes in infants and children?
“Stroke in children is uncommon but not as rare as we used to think,” says E. Steve Roach, M.D. in a July 21, 2008 article in the Journal of the American Heart Association. “The risk of stroke from birth through 18 years is 10.7 per 100,000 children per year.”
According to Children’s Hospital of Philadelphia (CHOP), “pediatric stroke affects 25 in 100,000 newborns and 12 in 100,000 children under 18 years of age. Stroke is the sixth leading cause of death in children.”
Better Health Channel says that “stroke is relatively rare among children. It is thought that around two out of every 100,000 children are affected worldwide each year. Most cases occur in children under two years of age.”
What are the different types of stroke?
There are actually a few different types of strokes. Some sites list two (2) types or stroke; some sites list three (3); and some sites list four (4). I want to make this as complete and informative as possible, so I will list the four types of strokes that I found.
Arterial Ischemic Stroke (AIS): caused by a blockage of blood flow in arteries leading to the brain from a blood clot or narrowing of an artery.
Cerebral Sinovenous Thrombosis (CSVT): caused by blocked drainage of blood from the brain by blood clots in the int the brain’s venous system. This may go away before permanent damage is done to the brain, or it may cause an ischemic stroke or intracranial hemorrhage.
Intracranial Hemorrhage (ICH): caused when a blood vessel bursts and bleeds into the brain tissue. ICH can be further broken down into four (4) types:
An epidural hematoma occurs when blood accumulates between the skull and the outermost covering of the brain. It typically follows a head injury and usually with a skull fracture.
A subdural hematoma is a collection of blood on the surface of the brain. A typical cause is the head moving rapidly forward then stopping, such as in a car accident. Another cause is child abuse when a child is shaken.
A subarachnoid hemorrhage occurs when they there is bleeding between the brain and the thin tissues that cover the brain. This can be caused by a trauma, or by a rupture of a major blood vessel in the brain.
The most common type of ICH is an intracerebral hemorrhage when there is bleeding inside the brain. Unlike the other three (3) types of ICH, an intracerebral hemorrhage is not usually caused by an injury.
Subarachnoid Hemorrhage (SAH): bleeding in the space between the brain and surrounding membrane, or subarachnoid space. The bleeding is usually caused by the rupture of an abnormal bulge in a blood vessel in the brain.
Transient ischemic attack (TIA): Although this isn’t actually a type of stroke, it is sometimes referred to as a warning or a mini-stroke. In a TIA, there is a temporary blockage of blood flow to the brain that lasts for a short period of time, from just a few minutes up to an hour. According to Mayo Clinic, about 1 in 3 people that have a TIA will eventually have a stroke, with about have occurring within a year after the transient attack.
As I mentioned in the answer to the previous question, “What is a pediatric stroke”, it is believed that James has an ischemic stroke in utero. Strokes are considered a medical emergency and the quicker you can get to the hospital, the better the outcome can be. Unfortunately for James, there was no way for us to know that he had a stroke.
What causes strokes? What are the risk factors?
Johns Hopkins Medicine answered both of these questions by saying that “causes of stroke in children are different than those in adults. Risk factors include:
- heart disease
- problems with blood vessels supplying the brain
- blood clotting disorders
- sickle cell disease
I don’t remember it mentioned in our conversations with doctors, but I’ve always assumed that it was James’ Factor V Leiden blood clotting disorder that caused his stroke.
What are the signs and symptoms of a pediatric stroke?
The US Centers For Disease Control and Prevention (CDC) lists the following signs of stroke in Men and Women:
- Sudden numbness or weakness in the face, arm, or leg, especially on one side of the body
- Sudden confusion, trouble speaking, or difficulty understanding speech
- Sudden trouble seeing in one or both eyes
- Sudden trouble walking, dizziness, loss of balance, or lack of coordination
- Sudden severe headache with no known cause
But what about infants and children? They could experience any one of the above symptoms, but depending on their age, they might not be able to tell you that they feel numb or confused or are having trouble seeing. So how would you know if your child had a stroke?
Children’s Hemiplegia and Stroke Association (CHASA) lists the following signs and symptoms of pediatric stroke:
- Newborns may or may not show early signs of stroke.
- The most common early sign is seizures. You may notice:
- A rhythmic twitching of the face, arm or leg and/or
- Pauses in breathing along with staring
- As your child grows older, you may notice these physical symptoms:
- A preference for using one hand over the other before age 18 months
- Decreased movement or weakness on one side of the body
- Seizures
Children’s Hospital of Philadelphia (CHOP) lists the following signs and symptoms of stroke:
- In children and teenagers:
- Weakness or numbness of the face, arm or leg, usually on one side of the body
- Trouble walking due to weakness or trouble moving one side of the body, or due to loss of coordination
- Problems speaking or understanding language, including slurred speech, trouble trying to speak, inability to speak at all, or difficulty in understanding simple directions
- Severe headache especially with vomiting and sleepiness
- Trouble seeing clearly in one or both eyes
- Severe dizziness or loss of coordination that may lead to losing balance or falling
- New appearance of seizures, especially if affecting one side of the body and followed by paralysis on the side of the seizure activity
- Combination of progressively worsening non-stop headache, drowsiness and repetitive vomiting, lasting days without relief
- Complaint of sudden onset of the “worst headache of my life”
- In newborns and infants:
- Seizures
- Extreme sleepiness
- A tendency to use only one side of their body
Children’s Hospital of Philadelphia (CHOP) also notes that “when stroke affects a newborn infant, symptoms may not appear until 4 to 6 months of age in the form of decreased movement or weakness of one side of the body.”
It is extremely important that you contact your pediatrician or healthcare provider if your child exhibits any of the above symptoms. As Children’s Hospital of Philadelphia (CHOP) states, “early recognition and treatment during the first hours and days after a stroke is critical in optimizing long-term functional outcomes and minimizing recurrence risk.”
How is a stroke diagnosed?
Chasa.org lists the following tests that may be used to diagnose a stroke:
- Head Computed Tomography (CT)
- Magnetic Resonance Imaging (MRI) which may require medicine for sedation
- Ultrasound
- Electroencephalogram (EEG) may be done if the doctor suspects seizures
- Electrocardiogram (ECG or EKG) may done if a heart problem is present or suspected
- Blood samples may be taken to check for blood clotting problem
They did an EEG and MRI on James the day after he was born. It was the MRI that showed that he might have had stroke in utero. I have to stress might because they were not really sure. They also did a blood test while he was in the NICU that revealed that he has Factor V Leiden which is a blood clotting disorder in which there is an increased tendency to form abnormal blood clots.
How are strokes treated?
According to KidsHealth.org, treatment for a stroke is based on the following:
- the child’s age
- what signs and symptoms the child has
- which area of the brain is affected
- how much brain tissue was damaged
- whether an ongoing condition caused the stroke
Chasa.org lists the following treatments for pediatric stroke:
- Medicines, called anticonvulsants, to control seizures
- Methods to control body temperature, hydration, and blood sugar
- The doctor may manage brain pressure
- Surgery may be needed to treat a hemorrhagic stroke
Johns Hopkins Medicine’s list of treatments also includes medicine and surgery, but add interventional neuroradiology as a treatment option. They also go into more detail for each treatment option:
- Medical therapy: Your child may receive aspirin or other blood thinners (anticoagulants) and special vitamins. Children with sickle cell disease and stroke may be treated with hydroxyurea, transfusion therapy or both. If the stroke is causing seizures, your child may need anti-seizure medication as well.
“Clot-busting” medications used successfully in adults have not yet been approved for use in children, but they may be considered in certain situations.
- Interventional neuroradiology: If your child has abnormal connections in blood vessels that feed the brain (arteriovenous malformation) or blood vessels with weakened walls that can bulge and tear (aneurysm), the doctor may place a catheter inside the affected blood vessel to help repair the abnormal area. In some situations, a catheter can be used to remove large clots in blood vessels to help restore essential blood flow to the brain. These interventional neuroradiology procedures are done with a catheter that is inserted into a blood vessel in the arm or leg and guided into the blood vessels in the brain.
- Surgery: A surgical procedure may be appropriate for certain types of stroke and other cerebrovascular disorders. The type of surgery needed depends on the cause of the stroke. Surgery to remove a piece of bone (craniectomy) may be required in cases with severe brain swelling. Some other surgeries for stroke include closure of abnormal blood vessels, removal of abnormal areas of the brain and rerouting blood vessels to help provide blood supply to injured areas.
What kinds of problems can a stroke cause?
Chasa.org says that “some, but not all children who’ve had a perinatal stroke or a stroke during childhood may develop:
- cerebral palsy (difficulty moving a part of his or her body), usually hemiplegia or hemiparesis
- epilepsy (seizures)
- speech and language difficulties
- sensory differences
- visual and hearing problems
- cognitive differences (learning disabilities)
- difficulty with paying attention (ADD or ADHD)
- behavioral or emotional challenges
They also note that “children often receive occupational and physical therapies for decades to help them learn functional skills of daily living and increase movement if they’re experiencing motor difficulties. Children with epilepsy usually take medication to stop or reduce seizure activity. Special educational programs may address learning and behavioral differences.”
If you are feeling a little discouraged about the possible outcomes of a stroke that are listed above, kidshealth.org offers a bit of hope. “At this time, there’s no treatment that can fix brain cells that have died. But undamaged brain cells can learn to do the jobs of cells that have died, especially in young people. In many cases after a stroke, kids can learn to use their arms and legs and speak again through brain retraining. This process is usually slow and difficult. But kids have an edge over adults because their young brains are still developing. Most kids who have had strokes can interact normally and be active members of their communities.”
Even if the doctors can’t say with 100% certainty that James had a stroke, we believe he did. If he didn’t have a stroke in utero, how else would we explain his cerebral palsy, epilepsy, no suck/swallow reflex, and vision issues?
Summary
Even though pediatric stroke is fairly uncommon, they do occur. If you found this article through a Google search, I hope I was able to answer any questions you may have had. If not, and you are looking for further information, please click on the links that I have sited throughout this article. Those links will open in a new browser tab.
And if there is one thing I was to reiterate, it is this:
It is extremely important that you contact your pediatrician or healthcare provider if your child exhibits any signs or symptoms of a stroke. As Children’s Hospital of Philadelphia (CHOP) states, “Early recognition and treatment during the first hours and days after a stroke is critical in optimizing long-term functional outcomes and minimizing recurrence risk.”