Smith is now a teacher and coach at Commerce ISD Middle School, where he is driven by a desire to educate his students and athletes about the importance of giving back. And what better way to do that than through donating PrayerBears?

"I like to teach kids about more than just school subjects," Smith explained. "We talk about philanthropy and what these bears mean to the children who receive them. This is just a small way I can involve others in giving back to such a wonderful cause."

The PrayerBear Program at Cook Children's gives admitted patients soft teddy bears for them to hold and cuddle. These bears offer a sense of comfort. They’re a gentle reminder that provides warmth and companionship during a difficult time. Smith specifically remembers the first two PrayerBears he received. These initial bears were handmade by a local church group, and he still has these two bears to this day. Having experienced the comfort of these bears, Smith has a strong appreciation for them. Holding a PrayerBear brings patients peace and reassurance that they are not alone.

Robin Brazell, interfaith ministry specialist and PrayerBear Program coordinator, was deeply touched and incredibly grateful for Smith’s donation. Brazell says this donation is extra special. The PrayerBear program would not exist without donors like Smith.

”What Adam has done is choose to give back following his own experience as a Cook Children's patient,” said Brazell.

Fernando Acosta Jr., M.D., neurologist and associate medical director of Movement Disorders at Cook Children’s, was Smith’s doctor who he credits for saving his life. The two now have a close friendship. 

“I've loved watching him grow over the years, and I'm privileged that, I'm a part of it,” Dr. Acosta said. “I can't imagine I could be any more proud of him if he was my own son.”

Thank you Adam Smith and Commerce ISD for this generous donation! 

Brighton Weeks needed surgery when he was just 2 weeks old to repair his rare and complex heart defects.

For follow-up care, his family chose pediatric cardiologist Danielle Moyé, M.D. at Cook Children’s Heart Center in Prosper, close to their home in Celina. During a routine checkup with Dr. Moyé, a test called an echocardiogram showed a ballooning mass of tissue filled with blood. Brighton needed another open-heart surgery to patch the leak.

Then, just before leaving Cook Children’s Medical Center – Fort Worth after the second surgery, 8-month-old Brighton had a small stroke. The stroke caused temporary weakness but no apparent long-term damage.  

Brighton made a remarkable recovery. He learned to eat on his own – after more than a year on a specialized diet fed through his nose – and has grown into a tall and energetic 2-year-old. He’ll likely need heart surgery again, probably when he’s a teenager, to replace the artificial tube he has now with a bigger device.  

“He’s doing perfectly,” Dr. Moyé said. “All of his oxygenated blood is going to his body and his brain, and all of the used-up blood is coming back to his lungs to get the oxygen.”

Like Brighton, nearly 40,000 infants in the United States each year are born with heart defects, according to the American Academy of Pediatrics.  American Heart Month gives us a chance every February to spotlight the specialized services Cook Children’s offers for patients whose heart chambers, valves or blood vessels are affected by congenital heart disease. 

Babies, children, teens and young adults come for diagnosis and advanced care at the Cook Children's Heart Center, where surgeons perform about 475 surgeries annually.  

“The initial diagnosis is understandably upsetting,” Dr. Moyé points out. “What I tend to tell parents is how resilient these babies are, and how well they do most of the time with cardiac surgery. I always tell them we’re there every step of the way.”

Correcting Defects

Kristin Weeks had a normal pregnancy with Brighton, born on April 14, 2022. As soon as the umbilical cord was cut, her 8-pound, 13-ounce son turned gray from low oxygen. A tube was inserted in Brighton’s airway to help him breathe.

Tests on his heart showed several misshapen structures, including a narrow arch of the aorta, a missing chamber wall, and a valve in the wrong place. As a result, oxygenated and deoxygenated blood were merging in the same chamber.

“His heart was mixing old blood and new blood and wasn’t able to circulate new blood through his body,” Kristin said.

Brighton soon underwent 14 hours of surgery to close the hole and insert a tube that connected his right ventricle to the artery that carries blood to his lungs. His nourishment came through a nasogastric tube through the nose, down the throat, to the stomach until he was 15 months old.

A checkup with Dr. Moyé in December 2022 took an unexpected turn when a blood-filled bulge was discovered along a surgical suture line. Concerned that the pseudoaneurysm could rupture, Dr. Moyé sent Brighton to Cook Children’s Medical Center – Fort Worth, where cardiothoracic surgeon Eldad Erez, M.D. removed the bulge and made reinforcements to prevent additional leaks.

The surgery went well. But a week later while in the hospital waiting on discharge paperwork, Kristin noticed Brighton’s mouth trembling oddly. Fearing a seizure, she called for help. Right away, Brighton received an MRI, which pointed to a stroke. His left arm was weak and he couldn’t blink his left eye.

Strokes happen whenever a clot blocks flow of blood to the brain. To treat the stroke, doctors started Brighton on anticoagulant medication. Within about 48 hours, the left-side issues had resolved. After a stay in the Cardiac Step Down Unit (CSDU) at Cook Children’s, Brighton returned home.

Growing and Thriving

Along his path to recovery, Brighton has seen experts from Cook Children’s neurology and hematology in addition to cardiology and the stroke team. Kristin is grateful for specific people who went the extra mile – including a pharmacist, a chaplain, and a child life specialist – to make the family’s experience the best it could be. 

For instance: When they arrived for the surgery in Fort Worth, a nurse wanted to know how Brighton’s parents handled his medications, feedings and other care at home.

“She sat next to me and said, ‘Tell me about it,’” Kristin said. “It felt calming and relieving that they were listening to me. I felt heard.”

Brighton can eat by mouth now. Scars from the surgeries have faded. He enjoys playing with his stuffed Peaks the Dragon, collecting Beads of Courage at his medical appointments, and entertaining his mom and dad Brian and three older siblings.

“He lives up to the name ‘Bright’ in Brighton,” Kristin said. “He thinks he is a comedian and makes us laugh all day every day. He loves to play and interact with everyone he meets.”

He takes a baby aspirin daily to prevent blood clots as well as several medications to help his heart. Early Childhood Intervention (ECI) provides speech therapy. And he goes twice a year to visit Dr. Moyé, who monitors his growth, oxygen saturation levels, and any changes to his heart size and performance. If all continues to go well, the appointments can be cut back to once a year. 

RELATED STORY:
Three Open-Heart Surgeries and Thriving: Toddler Overcomes Multiple Congenital Heart Defects

To spot the signs of stroke, remember the acronym BE FAST: 

Balance - Is there a sudden loss of balance or coordination?
Eyes - Is there blurred or lost vision?
Face - Is one side of the face drooping or numb?
Arm - Is there weakness, numbness or loss of movement in the arms, legs or one side of the body?
Speech - Is speech slurred?
Time - If you or someone you know is experiencing any of these symptoms, call 911 immediately.

Madisyn joins us on Untold: The Stories of Cook Children’s to tell us about the seemingly minor incident led to her paralysis, the challenges she faced, and the unwavering spirit that carried her as she walked out of Cook Children’s Medical Center three months later. You’ll hear how her faith, positivity and care at Cook Children's played a crucial role in her remarkable journey.

This episode is a testament to the power of the human spirit and the extraordinary things that can happen when hope prevails. Listen to the podcast on Apple Podcasts, Spotify or watch on YouTube. 

It came to her like a whisper. The subtle, yet undeniable urge to stand. Something Madisyn Green, then 15, hadn’t been able to do on her own for months after being told she would live the rest of her life as a quadriplegic and never walk again.

There, in the physical therapy room at Cook Children’s Medical Center, while alone in a moment of rest, Madisyn used all of her strength to push herself up from her therapy mat and stand on her own two feet. Untethered to any physical therapists, she relied on her faith, grit and resilience to do what was once thought impossible.

“That one day I heard like a whisper and there wasn't anyone around,” Green said. “I was on the mat and I just felt the urge to stand up. I couldn't move from my neck down. I couldn't move at all. So, I stood up for like a minute, and then I pulled back down and just immediately went into tears.”

In the days that followed, Green could force a wiggle here or a subtle movement there.

“You could barely see it, but it was a wiggle. First my index finger and just little things started happening. It was miraculous,” she said.

A Grim Prognosis

Green’s miracle story began May 9, 2013. She was a healthy 15-year-old and an accomplished competitive swimmer. But while at swim practice, a seemingly minor jar to her neck while planting her feet in the pool turned tragic.

“The pool was very shallow,” Green said. “So I just sat on the edge and scooted in and I guess I jarred my neck. So I practiced for two to three hours. And after I left the pool and was getting ready in the locker room, I just started going tingly and numb on my shoulders.”

Green became weak and her eyes were bloodshot. Concerned with her condition, a member of the swim facility’s staff called 911. Upon assessment, paramedics determined she was likely having an anxiety attack from the stress of tests earlier in the day and did not need to be transported to a medical facility. Madisyn’s mom arrived shortly after to take her home to rest.

But once in the driveway at home, Green wasn’t able to get herself out of the car. At first, her mom, Cody Bazan, thought Madisyn was being a playful teen, but soon realized something was very wrong. Bazan turned the car around and headed straight for Cook Children’s Medical Center’s Emergency Department. By the time they arrived, Green was paralyzed from the neck down, unable to do anything but blink her eyes.

Physicians ran a battery of tests and were able to determine that Green had a spinal cord stroke. A spinal cord stroke in a child is rare, especially in a healthy child without any known pre-existing or underlying conditions, much like Green.

Doctors turned their attention to figuring out why.

“I did hear that I saw like the whole Neuro team at Cook Children’s, and they had other specialists that were working around the clock trying to figure out what was wrong with me,” Green said. “They did tell me that my condition was not in a medical book.”

Physicians were eventually able to determine that Green did, in fact, have a rare, undetected pre-existing condition likely present since birth. It’s called congenital spinal stenosis, or narrowing of the spinal column. The seemingly slight jolt she took when entering the pool was enough to cause her spinal cord in the narrowed area to swell, cutting off blood supply and leading to the stroke. Doctors told Green that any jolt, bump or hit, even a minor one, could have elicited the response. It was just a matter of time. They also said she was fortunate to not have drowned in the pool that day.

Green’s prognosis was grim with little chance of recovering any movement lost from the catastrophic stroke.

“Spinal cord strokes, because of their inherent nature, probably carry less potential to recover and improve compared to other injuries of the central nervous system,” said Fernando Acosta Jr., M.D., neurologist and associate medical director of Movement Disorders at Cook Children’s Jane and John Justin Institute for Mind Health. Dr. Acosta is one of the physicians that treated Green.

All indications were that Green would be a life-long quadriplegic and never walk, or swim, again.

“Basically, all I could do was stare at the ceiling,” Green said.

Mindset Shift

After a few days in the ICU, Green was moved to the Rehabilitation Unit to gain as much function as possible while learning to live in her new body. She also underwent spinal stenosis surgery, after which she contracted pneumonia and had to be transferred back to the ICU.

The setback was one of her lowest points, but it brought her to her turning point.

“I've grown up a very faithful person and very positive,” she said. “At first, I was like, ’Why me, God? Why did this happen to me?’ But I turned my attitude around and I prayed about it. That's when I was like I've got to change my mindset. To get this done, I have to rely on my faith and God and his plan.”

To change her mindset, Green started by changing her view. If all she could do was stare at the ceiling and walls, she determined that everything within her eyesight would be inspirational. The walls of the hospital room she called home at the time were covered in motivational signs and posters, including a Cook Children’s t-shirt she picked out from the gift shop.

“I had it hung up and I said, ‘That's my walking out shirt. I will wear it when I walk out of here.’”

Eager to help Green cope with her new normal, many tried to convince her to accept the reality of her circumstances. But, like any true athlete, Green refused to give up. Every day she pushed her body to new limits and beyond. And, like any true teenager, she had a little fun along the way.

“The nurses there were phenomenal,” she said. “I was always hanging out and getting in trouble at the nurses station. I remember getting in the wheelchair and I would use my one good leg to roll down there, and I would stay up there all night. I had a snack drawer and they'd come hang out with me and we'd eat snacks and they'd help me do my hair and my makeup. Everyone there was so great and so supportive. But it was a test of my faith and endurance.”

Madisyn’s Miracle

Within three months, that miracle moment that started as a whisper grew to a triumphant roar.

On August 22, 2013, wearing her “walking out” shirt, Green did what she said she would do, and walked out of Cook Children’s Medical Center to return home for the first time since that fateful swim.

She and many others contribute her recovery to her faith and positivity.

“The amazing thing here is that I was not sure if she would ever walk again and, quite frankly, was not expecting her to walk again,” Dr. Acosta said. “When she first came to see me and she had some braces on and was walking, I was amazed.  Her recovery is a testament to the hard work she put in while in the Rehab Unit and after she left the Rehab Unit. She was a competitive swimmer, so she knew she would have to train as hard as she ever has trained to get to walk again. Her willingness to work hard, combined with the dedication and efforts that our Neurorehab staff exhibit daily with our patients, all came together to provide this unexpected and impressive outcome in her case.”

Today, Green walks with the help of nothing more than a brace on one leg, drives a car and works full time at a local pain management clinic where she often has the opportunity to share her story with patients. In her free time, you’ll find her hanging out with friends, family and her dog, Waddles.

“All the doctors basically said, ‘You've outdone every prognosis and everything we've had planned for you or we expected of you,’” she said. “‘You've overdone our expectations and you're a miracle child.’”

Sickle cell disease (SCD) can cause damage to blood vessels in the brain, putting children as young as age 2 at risk for stroke.

That’s why patients with certain types of SCD need preventive screenings called transcranial doppler ultrasound. The ultrasound measures how fast blood is flowing in the brain’s arteries, an indicator of stroke risk.   

SCD is a genetic disorder that causes red blood cells to be sticky, stiff and sickled – shaped like crescent moons, in other words. Sickled cells don’t move easily in the blood vessels, which causes pain and possibly anemia or stroke. Sickle cell disease affects people of African, Central and South American, Middle Eastern, Asian, Indian and Mediterranean descent. An estimated 1 in 365 Black newborns have SCD, a lifelong condition.

September is National Sickle Cell Awareness Month, a time to highlight the tools to treat children and teens with the disorder. Cook Children’s serves about 400 patients with SCD. About 5-10% of that population have the genes that make stroke more likely. They need ultrasound screenings at least once a year from age 2-16.

“The main patients that we are concerned about with stroke are the patients who have hemoglobin SS and sickle beta-zero thalassemia, which are severe types of SCD,” said Cassandra Wallace, RN, BSN in the Hematology and Oncology Center at Cook Children’s. “Those patients typically have a higher percentage of sickled cells and more damage done to the blood vessels in the brain. That’s what causes the changes to the blood flow and puts then a higher risk for stroke.”

Hematologist Clarissa Johnson, M.D. heads up the Sickle Cell Program at Cook Children’s, which includes testing, diagnosis, treatment and research. Ultrasound screening is one component of the program.   

Dr. Johnson said the ultrasound screenings allow the medical team to intervene before a stroke happens. Depending on the results of the ultrasound, the medical team might order further tests, adjust the patient’s medication, or start the patient on monthly blood transfusions. If the blood flow is normal, the ultrasound will be repeated in a year.

Screening for Stroke

Most SCD patients at Cook Children’s get their screenings done at the Dodson Specialty Clinics building. It’s a painless process that typically takes about 30 minutes.

Technicians target specific blood vessels on both sides of the patient’s head to measure the rate of blood flow. If inflammation has caused the vessels to narrow, the blood flows faster.

Dr. Johnson says ultrasound results fall into three categories:

• Normal
• Conditional yellow zone (slightly high rate)
• Elevated red zone (high rate)

Depending on what the ultrasound finds, follow-up care might include getting an MRI, starting on a medication, or adjusting the dose. Another treatment option is monthly blood cell transfusions to lower the percentage of sickled cells. 

Wallace said Cook Children’s keeps track of when SCD patients are due for their next ultrasound as part of their ongoing checkups. What’s the outcome? Better management of stroke risk.

“The changes that occur in the brains of sickle cell patients are not visible,” Wallace said. “We do the screening to pick up on minute changes that we may not otherwise see had we not done the transcranial doppler.”

Know the Signs

Another component of SCD care at Cook Children’s is educating patient families about the warning signs of stroke. A stroke occurs whenever the blood supply to the brain is disrupted, causing a loss of oxygen. It can happen at any age. The damage can be permanent.   

Sometimes a stroke happens “silently” and can only be detected later by MRI. Silent strokes occur in as many as 39% of children with SCD before they turn 18, according to the American Stroke Association. Silent strokes can cause learning difficulties and other cognition problems.

Overt strokes, meanwhile, cause slurred speech, facial droop, weakness in the arms and legs, difficulty walking and confusion. If your child has these symptoms, call 911.

“We try to push the parents to know that ‘Time is Brain.’ We want them to remember that it’s very important that they seek treatment right away to save as much brain tissue as we can,” Wallace said.

To spot the signs of stroke, remember the acronym BE FAST:

Balance - Is there a sudden loss of balance or coordination?

Eyes - Is there blurred or lost vision?

Face - Is one side of the face drooping or numb?

Arm - Is there weakness, numbness or loss of movement in the arms, legs or one side of the body?

Speech - Is speech slurred?

Time - If you or someone you know is experiencing any of these symptoms, call 911 immediately.

The most important thing to know is that strokes happen in children. If something is different or off about your child, seek emergency care.

Related Stories:

Teen Survives Life-Threatening Sickle Cell Crisis 

Fighting The Stigmas: Meet Daylen, the Sickle Cell Warrior

New Therapy for Battling Sickle Cell Disease Gives Hope to Younger Patients

Sometimes a mother’s intuition can be the difference between life and death. That was true for 7-year-old Ismael Aguilera whose episodes of debilitating headaches turned out to be a life-threatening condition. Ismael’s mom, Karla, questioned the doctor every time she was told he had migraines.

“I knew it was not normal for him to be feeling like that every few weeks,” Karla said.

Ismael went through eight months of episodes including unsteady walking, vomiting, dizziness, sweating, slurred speech and blurry vision. A couple of trips to the local Emergency Department also left Karla and her husband Isack with more questions than answers. Last July, Ismael had another episode, but this time one side of his face drooped down and one side of his body tingled. They once again rushed Ismael to the Emergency Department and pushed for answers. 

Worsening Condition

Ismael’s condition worsened as his mental status rapidly declined and he experienced weakness on his left side. Doctors in their local Emergency Department contacted Cook Children’s and the Teddy Bear Transport team acted fast. Once in the Intensive Care Unit at Cook Children’s, the team intubated Ismael and quickly began testing which revealed he was in a dire situation. Karla remembers hearing the doctors tell her the severity and urgency of Ismael’s condition, but she was in shock and not able to process everything.

“Even though I couldn’t think through it all, I had this feeling that he was going to be fine, and he would leave the hospital walking,” Karla said. “My faith in God got me through.”

They told her that during these episodes he was having smaller strokes but this one was in a different area affecting the basilar artery which can be fatal if not treated immediately. The area included the brainstem which coordinates breathing and maintains alertness. Only an extremely skilled physician can treat this successfully. 

Right Place, Right Team, Right Time

Marcela Torres, M.D., Cook Children’s Hematology and Oncology - Stroke and Thrombosis Program co-director, began treating Ismael with blood thinners to prevent more strokes. She had to strike a delicate balance with the medications – not enough could cause more strokes but too much could cause him to bleed into the vital area of his brain. 

“It is very possible he only had a matter of hours before we would not have been able to save him,” Dr. Torres said. “I remember watching the images of Ismael’s MRI in real time and texting Dr. Gerstle because I knew we needed him right away.”

Ronald Gerstle, M.D., pediatric interventional radiologist at Cook Children’s Medical Center, performed a thrombectomy which came with many risks but was the only chance at saving Ismael’s life. He very carefully removed the clot through a tiny catheter that went from Ismael’s leg to his brain.

“It takes an experienced stroke center with all the resources to perform these procedures in kids this young and in a timely manner so we can save their brains,” said Richard Roberts, M.D., pediatric neurosurgeon at Cook Children’s Jane and John Justin Neurosciences Center.

After the procedure, the team anxiously waited for Ismael to show signs of progress.

“There was a chance Ismael wouldn’t wake up after the procedure,” said Rachelle Herring, M.D., one of Cook Children’s pediatric stroke neurologists who treated Ismael in the ICU. “We were all surprised and thankful to watch him slowly wake up and then talk, move and regain function.”

A Miracle in the Making

After five days, Ismael was extubated. Drs. Herring and Torres checked on him frequently to monitor his neurologic status and assess his level of recovery. Ismael continued to improve at a faster pace than anyone expected. He spent one month in rehab learning to walk and eat again – all while wearing a cervical collar since the doctors suspected his strokes were caused by bow hunter’s syndrome. With this condition, turning the neck compresses the artery and causes strokes.

Two months later, Dr. Gerstle performed an angiogram to confirm the diagnosis. Sure enough, every time he turned Ismael’s neck during the procedure, it began to compress the artery.

Road to Recovery

In January, Dr. Roberts performed a rare procedure fusing Ismael’s head and neck to prevent further strokes. Dr. Roberts placed screws in the cervical vertebrae and a head plate on the base of his skull – operating in an area that was one millimeter away from the artery running through Ismael’s neck.

Since then, Ismael has continued to recover well without any vascular events. In April, he was cleared to remove the cervical collar and continues to follow up with Dr. Roberts and Fernando Acosta Jr., M.D., Stroke and Thrombosis Program co-director.

“He now has an excellent prognosis with a low risk of more strokes,” Dr. Herring said. “His recovery has been miraculous considering where the major stroke was located. We are all so amazed.”

‘Thank God They Knew What to do’

“We needed to be at Cook Children’s all along,” Karla said. “Everyone from child life specialist Madi Mayfield who Ismael called his best friend to nurse Tyler Adair who went out of his way to make him happy with special handshakes and talking about his favorite things to the amazing doctors who got Ismael to where he is today. Thank God they knew what to do.”

Because of the fusion, Ismael will not be able to participate in impact sports or jump on trampolines or bounce houses. This could pose a significant risk of extension or hyperextension of the neck and potentially break the hardware or his bone putting Ismael at risk for strokes again.

But other than that, Karla says he is back to being a normal kid who loves animals, riding horses, playing outside and watching the Steelers play football.

“Ismael has such a caring heart,” Karla said. “I really think God put him on this journey to help others. He has a purpose here.”

To spot the signs of stroke, remember the acronym BE FAST:

Balance - Is there a sudden loss of balance or coordination?

Eyes - Is there blurred or lost vision?

Face - Is one side of the face drooping or numb?

Arm - Is there weakness, numbness or loss of movement in the arms, legs or one side of the body?

Speech - Is speech slurred?

Time - If you or someone you know is experiencing any of these symptoms, call 911 immediately.

The most important thing to know is that strokes happen in children. If something is different or off about your child, seek emergency care.

It’s hard to imagine how a stroke could be a blessing in disguise, but Joseph and Allison Turner believe it was for their son, Owen, when he was just 8 months old.

“The stroke caused all kinds of battles that we’re still battling today, eight years later, but it saved his life,” Turner said.

When Joseph noticed Owen wasn’t moving the right side of his body while playing with his baby on a Sunday morning in January 2014, he and Allison knew something was terribly wrong. In addition to the loss of movement, their otherwise happy and content baby was fussy and irritable. He was suddenly behaving differently than he had been just a few days earlier when Allison took Owen to his pediatrician to check out a few bumps that appeared on the top of his head. Initially thought to be cysts, the doctor scheduled Owen for a return visit the following Monday to have them rechecked. But the changes they saw in Owen that Sunday morning led them to rush to the nearest emergency room in Cleburne, Texas, just one day before their scheduled follow-up appointment with Owen’s pediatrician.

Things moved quickly at the ER. It was apparent to doctors there that Owen’s condition warranted a more specialized level of pediatric care than could be given at their hometown hospital, so doctors called a helicopter ambulance to transport Owen to Cook Children’s Medical Center. Joseph wanted to be at Cook Children’s as soon as the helicopter landed with his son, so he jumped in his truck to make the 30-minute drive to Fort Worth. Allison stayed behind with Owen to travel in the helicopter with him.

As they were waiting for the air transport doctors were simultaneously running a number of tests to try and determine the cause of his stroke and interrupt further damage as quickly as possible. A diagnosis came quickly, and it was beyond belief for Allison—acute myeloid leukemia (AML), a fast-growing blood cancer that worsens quickly if not treated.

“Absolutely not,” Allison said describing her initial reaction. “There must be something else. It can’t be. This is my perfectly healthy baby.”

But Owen was critically ill. Abnormal leukemia cells were quickly building up in his blood and crowding out normal cells, which Allison says thickened his blood and led to the stroke. The bumps that appeared days before turned out to be clusters of leukemia cells sitting on top of his head. Had the stroke not prompted the Turners to take Owen to the ER, doctors told the family he may not have lived to make it to his scheduled doctor’s appointment the next day.

Allison rode with Owen in the helicopter to Cook Children’s in shock. Their lives had just changed forever, but there was no time to dwell on their disbelief. At Cook Children’s, Owen was immediately admitted to the pediatric intensive care unit (PICU) and met by Kenneth Heym, M.D., a pediatric oncologist and medical director of Cook Children’s oncology program. Dr. Heym wasted no time treating Owen’s cancer. That very Sunday night, the Turner’s baby boy began his first round of chemotherapy.

For the next four months, Cook Children’s was the family’s home while Owen underwent chemotherapy treatment. They left twice, but only to stay a few days just down the road from the hospital at Ronald McDonald House Fort Worth. After completing the intense AML treatment protocol, Owen was discharged from Cook Children’s in May 2014 and returned home for the first time in months.

In a matter of days, Allison and Joseph went from knowing little to nothing about AML to becoming experts on the topic. They credit their relationships with other cancer families at Cook Children’s for learning the ropes. Allison recalls that Cook Children’s chaplains would often stop by for a visit with Owen, and she would sometimes take that opportunity to step out and visit with other moms on the unit.

“Talk to the other cancer families if you're on the cancer floor,” Allison said about the advice she gives to families facing a new cancer diagnosis. “Those people were our family. We still send Christmas cards every year to the families that were inpatient while we were inpatient. They were such a support system. They share in something that nobody else on the outside would ever understand. Meet, find and talk to other cancer moms and cancer families that are going through the same thing.”

Today, 9-year-old Owen is cancer free and loving life, despite having a few lingering issues as a result of the stroke, like weakness on the right side of his body for which he continues weekly therapy. The stroke also led to daily seizures. In 2018, Owen became the first patient at Cook Children’s to undergo a trailblazing endoscopic surgery that disconnects part of his brain to stop seizures.

Even with these challenges, Allison says her son is a happy, easy-going kid looking forward to a future full of possibilities. If Owen has anything to do with it, that future will include lots of golfing and fishing, scoring a few goals for his soccer team, and cheering on Dude Perfect as they attempt their epic stunts.

About AML

Acute myeloid leukemia (AML) is a fast-growing blood cancer that originates in the bone marrow where blood cells are made. It starts with the abnormal growth of cells that form white blood cells, red blood cells or platelets. The abnormal cells end up crowding out normal blood cells, which can lead to infection, anemia and a tendency to bleed easily.

Of the more than 10,000 children diagnosed with cancer each year, nearly one in three cases are a form of leukemia. There are two main types of acute leukemia, with AML being the least common one in children.

Symptoms may be hard to spot. In Owen Turner's case, his symptoms began with bumps on the top of his head and escalated quickly resulting in a stroke. 

Other symptoms may include:

●     Easily tires, is weak or dizzy

●     Pale or ashen skin

●     Shortness of breath, trouble breathing or an unexplained cough

●     A fever or infection that doesn't get better

●     Bleeds or bruises easily, the gums may bleed often when brushing the teeth, recurrent nosebleeds

●     Continual bone or joint pain

●     A swollen belly

●     Swollen lymph nodes on the sides of the neck, underarms or groin area

●     Headaches, seizures, vomiting

●    Non-itchy rashes caused by bleeding under the skin

Acute myeloid leukemia is aggressive. It can move into other parts of the body and, if left untreated, can lead to death within six months or less.

If your child experiences any of the above symptoms, it is wise to talk with your pediatrician about them.

March 28, 2022, was coming to a close like any other ordinary day for the Chavez-Llanas family. Salvador and Laura Chavez-Llanas were upstairs bathing their youngest of three sons while their older two were playing video games downstairs. In a moment, their peaceful evening turned to chaos.

A cry for help rang out from downstairs. It came from Salvador and Laura’s middle son. Laura rushed to check on him, only to find her oldest, 8-year-old Santiago, on the floor. He was conscious but drooling, and unable to stand up or move the right side of his body. His speech was slurred, and one side of his face drooped.

Laura yelled for her husband’s help. He called 911, and an ambulance arrived within minutes to carry Santiago to the emergency room at Cook Children’s Medical Center. That’s where Laura met Rachelle Herring, M.D., a pediatric neurologist.

“Santiago was pretty severely impaired at that point,” Dr. Herring explained. “He had a dense hemiplegia, which means he really could not move the right side of his body at all. He had very slurred speech but, fortunately, he was alert and understood everything that was going on.”

Santiago quickly underwent imaging tests of his brain. They confirmed he was having an ischemic stroke. This type of stroke occurs when a blood clot blocks the flow of blood in a vessel in the brain, cutting off oxygen and disrupting the function controlled by that part of the brain.

“We were just playing our Nintendo Switch and that's when my controller fell," Santiago said. "I started reaching for it, but then I felt like I was getting weak in my right side so I tried even harder to get it and then I fell down.”

Santi, as his mother calls him, has always been a healthy, active boy who loves playing basketball, swimming and riding bikes with his family. Never did his parents imagine their son would be one of the 5 in 100,000 kids each year ages 1 to 18 to have an ischemic stroke. It’s more common in newborns, occurring in 1 in 2,500 full-term infants during their first month of life.

“It was pretty shocking,” Laura said. “Your world as you know it just disappears. It’s so hard.”

Time was of the essence. With stroke, recovery is directly related to how quickly treatment can be administered. But stroke in children is so rare that the drug considered the gold standard treatment for adults has not been studied enough in kids to be approved for use in pediatric cases.

The medication, called tissue plasminogen activator, or tPA, breaks up blood clots. It’s administered through an IV with the goal of dissolving the clot within the vessel and restoring as much blood flow as possible. To be most effective in reversing damage, it must be administered within 4 ½ hours of the onset of stroke.

Although it’s considered off-label to use tPA to treat children, some hospitals administer the drug to pediatric patients after carefully weighing the risks and benefits.

“That’s what we did in the case of Santiago,” Dr. Herring said. “He came in very quickly after the stroke and I reached out to Dr. Marcela Torres, our hematologist who specializes in blood clots, about giving tPA. We’re basing our decision on the adult data that when the patient comes in within 4 ½ hours of an ischemic stroke, we think tPA can help restore the blood flow to the affected area of their brain."

Dr. Herring explained the risks of using the powerful drug to Santiago’s mom.

“At that point, I couldn’t say no,” Laura said. “Because I want to have my kid with me.”

It was the right call. Not long after receiving the drug Santiago’s symptoms began to resolve, and he was transferred from the ER to the pediatric ICU for monitoring. Because tPA is a blood thinner, patients are at risk of bleeding and must be watched closely. The stroke team also wanted to keep an eye on his neurological status and run tests to determine the cause of the stroke. 

Images of Santiago’s brain showed inflammation of the blood vessels consistent with a condition called cerebral vasculitis.

“We don't know exactly what caused the vasculitis,” Dr. Herring said. “It could have been triggered by some type of prior infection. The body's immune system goes a little haywire and can cause irritation to the blood vessels in the brain.”

Santiago spent two weeks in the hospital, all the while making a remarkable recovery. By the time he was discharged he had only a mild facial droop and had regained all of his movement. He’s on medications to reduce inflammation in his blood vessels, as well as blood thinner to prevent more strokes, and will undergo more imaging tests in the future to make sure his vessels return to normal.

In the meantime, Santiago is enjoying being back home with his family and back to school part time.

Looking back, Laura recalls a few things her son told her that may have signaled something was wrong. A few days before the stroke, Santiago complained of not feeling well. He said he felt like he was going to pass out at school. When questioned in detail by his mother, the only word he could find to describe how he felt was “weird.” Now, Laura wants parents to know to listen to their kids and know the signs and symptoms of stroke.

“Look at your kids,” she said. “Look at how they're behaving, and if they tell you something hurts, pay attention to every single different thing.”

To spot the signs of stroke, remember the acronym BE FAST:

Balance - Is there a sudden loss of balance or coordination?

Eyes - Is there blurred or lost vision?

Face - Is one side of the face drooping or numb?

Arm - Is there weakness, numbness or loss of movement in the arms, legs or one side of the body?

Speech - Is speech slurred?

Time - If you or someone you know is experiencing any of these symptoms, call 911 immediately.

“The most important thing to know is that stroke happens in children,” Dr. Herring said. “If something is different or off about your kid, do not discount it. It could be something serious. Seek emergency care because even if they're not a candidate for tPA, sometimes they're a candidate for other therapies. The sooner we're able to see that patient and try to figure out what's causing the stroke, the better off their prognosis is going to be.”

In August 2017, Ethan was playing tag with his cousins around the house when he fell. His mom, Lauren Findley, kept asking him what was wrong, but after a few minutes of coaxing, she and her husband quickly realized Ethan needed to go to the emergency department. Their 4-year-old son was showing symptoms of a stroke.

“We kept asking what was wrong and he told us he had sand all over his body and that he felt sandy,” Lauren said.” It took us a few minutes to realize he was trying to tell us he was numb, and the reason he wasn’t standing up was because he couldn’t.”

Ethan was taken by his parents to the Emergency Department at Cook Children’s Medical Center, where they were met by physicians to begin stroke protocol. He was rushed to an MRI, which confirmed Ethan sustained a stroke in the motor skills area of his brain.

Ethan could not use his right arm or hand, lost his ability to walk and lost his eye sight for a short period of time. Ethan remained in the neuro and rehab units for nearly a month, working to relearn the basic abilities his stroke had taken from him.

Ethan slowly began to make strides in all of his therapies, and now three years later, plays soccer and basketball. His parents are taking it all in, and appreciating everything Ethan has accomplished so quickly.

“It just really makes me extra grateful for every little milestone,” Lauren said. “A few weeks ago he learned to ride his bike without training wheels, and it was very special. We trusted in God, and our friends and family really came around to support us.”

While most people are unaware of strokes in children, kids can even experience strokes with no family history. Approximately six to 10 in 100,000 children are affected by stroke.

“It was definitely a shock. First of all, I didn’t know a kid could get a stroke. We didn’t understand or know much about it,” Lauren said. “Time matters for strokes in kids too. Our families don’t have a history of stroke and it really can happen to anyone.”

While the Findleys may not have been aware children could experience strokes, their quick reaction gave Ethan a chance to recover. Implemented in 2019 after Ethan’s experience, the stroke protocol in the Emergency Department is able to determine symptoms and begin treatment within minutes of arrival.

“Well-coordinated efforts to evaluate kids for stroke is required to do this as fast as possible. We need to get the information needed in order to have the treatment team poised and ready to react appropriately once the stroke is confirmed,” Dr. Acosta said. “We have accomplished this at Cook Children’s by implementing a ‘stroke alert’ protocol for the hospital. This is an accomplishment that requires the cooperation of over 15 departments to make this possible and is another sign of dedication and commitment of the staff to make this a reality.”

Jakera wasn’t in pain but her mom, Tiffany Ferguson, noticed her little girl had lost range of motion on her right side.

“She couldn’t open her hands, she couldn’t lift her arms. I immediately called her doctor and told her that Jakera couldn’t move anything on right side. She told me it sounded like a stroke and to call 911,” Tiffany said.

An ambulance rushed Jakera to Cook Children’s where she was treated for a stroke and diagnosed with moyamoya, a more serious disorder that developed from her sickle cell disease. Moyamoya can occur when sickled red blood cells cause repeated damage to the blood vessels in the brain. The blood vessels begin to tangle and create a “puff of smoke” appearance on an MRI.

Moyamoya can lead to more stroke activity and typically requires surgical intervention to improve blood flow around damaged blood vessels. Jakera’s medical team decided to intervene before another stroke could occur.

Jakera had revascularization surgery in February 2019, a procedure where surgeons flipped the protective covering on top of the brain (the dura) to encourage the main artery there, the middle meningeal artery, to create new collateral arteries into the brain.

Following the surgery, Jakera now receives blood transfusions every four to six weeks.

Along with interventions such as blood transfusions, sickle cell disease is also managed by medications and potentially a stem cell transplant for long term success against the disease. But finding a donor can be seemingly never ending. Physicians will look to find a match from siblings and family first before trying to find an unrelated donor, according to Cook Children’s physician Clarissa Johnson, M.D. Jakera has not yet had a stem cell transplant, but her family remains hopeful she’ll find her match.

“A stem cell transplant is a cure for sickle cell disease because you’re basically putting new stem cells in the body,” Dr. Johnson said. “Red blood cells are made from stem cells so if you put new stem cells in the body that don’t contain Hemoglobin S, you are creating a situation where you no longer have stem cells that make sickle cells.”

With sickle cell, stroke and moyamoya, Jakera has endured her share of hardships, but it wasn’t until she was diagnosed with Bow hunter’s Syndrome that she was affected by just the turn of the head.

“She started blacking out three to four times a day. It happens [when she turns] like a bow and arrow hunter when they have to turn their head to the side to aim,” Tiffany said. “She was born right handed but when she turns her body to the right, it cuts off the circulation to her brain so she actually switched hand dominance to the left.”

Jakera had a spinal fuse from the back of her neck down to her shoulders to limit the amount she can physically turn. She can no longer turn more than 90 degrees to ensure there is enough blood reaching her brain. While this is not a cure, her physicians believe it will relieve the loss of consciousness.

Jakera is not the only one in her family impacted by sickle cell disease. Her father also faces medical difficulties.

“There were days where I was running from Cook Children’s to Harris and back to Cook Children’s so that I could be with both of them during their crises,” Tiffany said. “Everyone in the family is learning to deal with it because we know it isn’t going to go anywhere right now, but they understand the most important thing is making sure they [Jakera and her father] are OK.”

Four major diagnoses and two surgeries in five years could seem daunting to most, but Jakera has flown through it all with ease, and has even made the local cheerleading squad.

“She’s like a little woman,” Tiffany said. “She takes it and keeps on moving. The stroke limited her a lot but the squad has been so good to her. She always pushes through.”

But nine months ago, that choice was anything but simple.

Despite trials of at least six different medications – nothing stopped Owen’s daily seizures. The Neurosciences team at Cook Children’s decided to make a pitch that’s almost too much for any parent to comprehend.

Owen’s seizures are unique in that they arise from a large area of his brain. The epilepsy team believed his best chance of becoming seizure-free was to disconnect the left side of his brain from the right. They wanted to sever the fibers (corpus callosum) that connect the two sides of Owen’s brain.

One traditional approach to this type of surgery is called corpus callosotomy, which often involves a large incision on the patient’s skin, opening a large hole in the skull, and then cutting the corpus callosum in half. While previously considered by many to be the “gold standard,” with good seizure control rates after surgery, it involves a lengthy recovery in the hospital and then at home.

While Owen’s family wanted better seizure control, they were reasonably hesitant to undertake such an invasive surgery.

Fortunately, Cook Children’s neurosurgeon, Daniel Hansen, M.D., was one of only a few pediatric neurosurgeons in the United States, who has experience doing similar procedures using less invasive endoscopic techniques.

Endoscopes (small video cameras with channels for operating tools) allow the surgeon to perform surgery through much smaller openings in the skull. When successful, this means a smaller incision, less surgical blood loss, quicker operating time, shorter hospital recovery, and the same chance of seizure freedom post-operatively as if undergoing a more traditional open surgery.

Owen’s family understood that endoscopic epilepsy surgery is the leading edge of advancement and their child would be the first such surgery at Cook Children’s, and one of only a few in the country that have been reported.

“Giving their consent and placing trust in our team, we went forward with surgery,” Dr. Hansen said. “The operation itself went well, we were able to completely disconnect the two hemispheres of the child’s brain using a bony opening not much larger than an inch square, and his recovery in the hospital was quick.”

A quick hospital stay was welcome news to Owen’s family. He’d already spent too much time at Cook Children’s fighting for his young life.

Owen’s story really begins at 8 months of age when his parents noticed weakness on his right side. His parents knew something wasn’t right with their son and they made an appointment for Monday with their pediatrician. But over the weekend they became afraid when Owen stopped using the right side of his body.

His parents rushed Owen to the nearest emergency room in Cleburne, Texas. From there, he was airlifted to Cook Children’s by CareFlight.

“We were so fortunate,” Allison Turner, Owen’s mom, said. “That's the day we met (Kenneth Heym, M.D.), who would become Owen’s oncologist. He happened to be on call that weekend. He met us there. He told us at that point, our kid was one of the sickest in the hospital. If we had waited to bring him in until the next day, Owen may not have made it.”

His initial scans showed a large stroke in the left side of his brain which soon was discovered to be related to a new diagnosis of acute myeloid leukemia. Owen endured four phases of chemotherapy and fortunately entered remission where he remains today.

While his stroke left him with right-sided weakness requiring ongoing aggressive therapy, it was his seizures that proved to be the most debilitating obstacle to overcome.

Owen’s first seizures occurred in the days following the stroke, but they were initially controlled with medication. He was able to stop taking medication shortly after his initial diagnosis, but the seizures returned around age 3.

His parents say Owen’s seizures involved periods of suddenly pausing in activity with a decreased response to them and sometimes unprovoked laughter. Other events were described as a sudden fall to the ground or stiffening and shaking of his arms and legs posing a significant risk of injury. Despite the trials of at least six different medications – nothing helped his daily seizures.

His neurologist at Cook Children’s, Howard Kelfer, M.D., referred Owen to the Cook Children's Comprehensive Epilepsy Program for epilepsy surgery evaluation.

Once Cynthia Keator, M.D., took over his case, she began a workup to determine where in the brain his seizures were arising, knowing the likelihood of seizure control with medications was minimal. Owen’s evaluation in the EMU (epilepsy monitoring unit) captured many seizures starting from the left hemisphere. Additional evaluation with a MEG (magnetoencephalogram) scan showed multiple areas of abnormal electrical activity throughout the left hemisphere both in front and behind the region of his prior stroke.

With options running out, the Neurosciences team suggested the trailblazing endoscopic surgery and introduced the family to Dr. Hansen.

Owen is now 9 months out of surgery and the family has noticed no seizures since. He’s an active young boy, playing with his monster trucks, who is making steady strides in kindergarten now that his uncontrolled seizures have stopped. While it remains too early to speak to years of seizure control, doctors say this is an encouraging start.

“After everything we’ve been through, I don’t know if you ever say you are comfortable. I guess we’ll always be on guard,” Allison said. “But we’re a little more relaxed now. Before the surgery, we never knew when a seizure would come on. Owen couldn’t go outside and play without one of us with him.”

Given the successful outcome with Owen, Cook Children’s has since performed two additional endoscopic procedures with similar favorable results. The Epilepsy team hopes to expand the number of children who are candidates for this type of surgery in the future. Such children will have medically refractory epilepsy and will have undergone a thorough evaluation by the team at Cook Children’s. Potential surgeries that can be performed endoscopically include complex surgeries including corpus callosotomy, single lobe disconnections, focal lesion resection, and functional hemispherectomy. As the team’s experience grows with this technology and technique, its use may expand beyond this short list.

And in the process changing more lives for the better.

“It has been such a relief for us. It was a huge decision to disconnect his brain. Just saying those words … But this was the best thing for him,” Allison said. “He has flourished. He’s made improvements by leaps and bounds. He has progressed in everything. His speech, school work, everything. His whole body is functioning with just the use of one side of his brain. He can’t throw a football with his right hand and he has problems with his fingers on his right hand. He can’t pick up a Cheerio with his right hand. But other than that, I don’t know if anyone would notice a difference in him and any other child.”

Four-year-old CJ was known for temper tantrums and holding his breath when he was upset. But one morning while getting ready for school, CJ threw himself on the floor and began screaming and crying. When his legal guardian Rachelle Lipka saw what was happening, she immediately realized this time something was different.

“I stood him back up and was hugging him and he was hugging me back, but he was only hugging me with one arm,” Rachelle said. “I asked him what was wrong and he wouldn’t answer me so I pulled him away to look at his face and he was still crying, but his mouth looked crooked.”

Although she had doubts her 4 year old could have a stroke, Rachelle was aware of the symptoms and took CJ to their local hospital in Cleburne, Texas. Physicians made the decision to transfer CJ by ambulance for an MRI at Cook Children’s.

“It was like we were watching him deteriorate right in front of us,” Toliver Lipka, Rachelle’s husband and also CJ’s legal guardian, said. “A lot of people were preparing us for the worst.”

Depending on where the stroke occurs within the brain, recovery will differ in every case. However, receiving treatment quickly can help limit a stroke’s damage. Currently, 80% of children who have suffered a stroke will have some type of neurological deficit resulting from the stroke, according to Marcela Torres, M.D., a Cook Children's hematologist and oncologist and co-medical director of the Stroke and Thrombosis Program.

“It just changed so fast. I was with him at our [local] hospital and he was normal besides his smile,” Rachelle said. “By the time the MRI was over he wasn’t talking, he was drooling and his sentences when he did try to talk were jumbled. We couldn’t understand him.”

A high percentage of childhood strokes can be traced to cardiac disease, blood vessel disease or sickle cell disease, although some families can be left without an identifiable cause.

CJ was diagnosed with focal cerebral arteriopathy, which is linked to inflammation and is often found in chickenpox (varicella). But it can also be linked to other infections through a virus, Cook Children’s nurse practitioner Jo Tilley said.

“He always had a runny nose, but he goes to daycare so we just thought he was sick. The neurologist told me there’s often a link between pediatric stroke and viral infections,” Rachelle said

Once diagnosed, doctors use a stroke scale to determine the extent of damage, which allows the neurology team to plan a course of treatment.

“The stroke scale is a quick way to focus in on the symptoms that a stroke causes, to quantify the symptoms and determines the stroke severity,” said  Fernando Acosta, M.D., a neurologist and co-medical director of the Stroke and Thrombosis Program at Cook Children's. “The stroke severity will determine what acute interventions may or may not be appropriate for the patient, and it’s a way to follow the patient’s progress.”

CJ’s stroke was considered severe and he needed admission to the Neurological Intensive Care Unit before he started speech, occupational and physical therapies at Cook Children’s Rehabilitation Unit.

“Even though there has been lots of progress in the treatment of adult stroke, there are huge gaps in pediatric stroke treatment,” Dr. Torres said. “Fortunately, there’s a lot of ongoing research in pediatric stroke and Cook Children’s remains at the forefront of it.”

CJ stayed in the pediatric ICU for a week until he was cleared for physical, occupational and speech therapy. A month later on his fifth birthday, he was released from the hospital.

Childhood strokes can impact various motor and cognitive functions, some patients can have both depending on treatment and severity of the stroke.

“If you didn’t know he was a stroke victim, you’d never be able to tell. He has a bit of paralysis and walks with a brace, and he’s switched to being left-handed because it’s a bit of a struggle to use that right arm,” Toliver said. “We can only tell because we’re around him every day”

Rachelle and Toliver recognized an immediate change in CJ’s personality after his stroke and said it was as if they had to get to know a new child. Before CJ’s stroke, he was argumentative and his guardians said he seemed just like a little adult, but six months post-stroke he has fewer tantrums and acts like a typical kid again.

“Depending on the location of the stroke, there can be personality or behavior problems, there can be motor problems such as incoordination, weakness, increased muscle tone, abnormal movements and visual disturbance,” Dr. Acosta said. “If it’s a larger territory stroke then you have any combination of those. We usually see a combination of these changes in kids with these deeper strokes.”

Although CJ is still experiencing some weakness on his right side, his ranch animals are helping him with his own version of physical therapy back at home.

“We have a small ranch and he helps us work on it now. He works hard,” Toliver said. “When we got back from the hospital he went straight to the fence to meet his donkey. He helps me steer the tractor, and that’s really helped with his physical therapy.”

While they would never have imagined CJ would have a stroke, Toliver and Rachelle felt at ease knowing he was a member of a different type of family at Cook Children’s.

“The team in the PICU were just angels,” Toliver said. “They took care of CJ like I had never seen anyone do before. In addition to that, they made sure we were always comfortable. It was just the best experience that could have come from this as far as being in a hospital.”

As CJ continues to recover, his guardians are amazed by his progress and resilience.

“He’s our hero. He’s a superhero,” Toliver said. “CJ is just so unique, he changed our lives.”

- By Ashley Parrott

But when they realized she wasn't using her left arm, they became alarmed.

Autumn admits it took a little bit to be concerned because the last thing on her mind was that her young daughter could have a stroke.

"I didn't even know kids could have one," Autumn said.

Kynlee was born on March 5, 2015, in Oklahoma. Autumn and Darrell hoped for a healthy child, after watching their oldest daughter, Addison, now 9 years old, battle cancer throughout her young life.

But from the beginning, Kynlee faced health problems. She was born with bladder dysfunction and was cared for by Blake Palmer, M.D., a pediatric urology specialist and surgeon. 

"Our older child faced so many medical problems and we kind of became used to having something wrong with our child," Autumn said. "But to have another child with medical issues was very emotional."

Even with everything they had gone through at this point, nothing prepared Autumn and Darrell for what occurred on May 2017 in their little town of Coyle, Okla.

When things didn't change with Kynlee's left arm, they went to their local ER where Kynlee was initially diagnosed with a stroke. She was transferred to a larger hospital in Oklahoma, and after a lengthy hospitalization, the family returned home with limited information about Kynlee's condition.

Once again Kynlee started having similar stroke symptoms in July 2017, but these were thought to be seizures. At first doctors placed Kynlee on seizure medication, but that didn't work because that wasn't effective against the little girl's mini strokes.

At the same time this was going on, doctors found Kynlee needed heart surgery to repair a hole they found in her heart. Kynlee had been scheduled for cardiac surgical repair at another hospital in July 2017, but it was canceled due to high risk and complexity of her medical condition.

Autumn and Darrell were at a loss by the end of the year and struggling to find some hope for their daughter's condition. They found it in an old friend. Dr. Palmer had moved to Cook Children's and was still seeing Kynlee for her urological condition. He suggested Kynlee be seen by Cook Children's Comprehensive Stroke and Thrombosis Program.

Lori Buechler, a nurse in Urology who works with Dr. Palmer, coordinated the family's care with Jo Tilley, the stroke and thrombosis PNP, to transfer records, imaging studies and complications involved with dealing with multiple specialties.

"Dr. Palmer and his nurse Lori have always been there for us," Autumn said. "I'm not sure we could survive without their help."

The Thomas family arrived at Cook Children's Stroke Comprehensive Clinic in January 2018. "We saw the stroke team," she said. "And I mean it was a team. We saw everyone you could think of. We stayed three days at Cook Children's and we found everything in three days that we had waited months to find out. We had a diagnosis. They performed four or five tests that no one had ever performed on her in Oklahoma and she was seen by every specialist you can imagine in that time

"When she got here, Kynlee's condition was severe and significant, which placed her at imminent risk for further harm due to stroke or cardiac arrest," said Fernando Acosta, M.D., a neurologist and associate medical director of Stroke and Thrombosis Program at Cook Children's. "We felt it was in Kynlee's best interest to be admitted as quickly as possible for further investigation." Marcela Torres, M.D., a hematologist and director of the Stroke and Thrombosis Program at Cook Children's, agreed with Dr. Acosta. Kynlee was in a precarious state because, despite her preventive antiplatelet therapy, her congenital heart disease would likely also affect her brain perfusion. So, after her admission, several sub-specialists were quickly consulted, including Cardiac ICU, Cardiology, CV surgery team and Sami Hadeed, M.D., a pediatric pulmonologist.

During her initial admission, Kynlee was placed on the Epilepsy Monitoring Unit without any antiepileptic medication. The EEG showed no signs of epilepsy and she was taken off of her medication. Imaging indicated Kynlee did have a new stroke to her right front lobe. This explained Kynlee's earlier episodes where she lost movement on her left side.

Prior to genetic testing, Kynlee was initially diagnosed with a cerebral vasculopathy, similar to Moya Moya syndrome, a rare disease that affects arteries in the brain.

"Kynlee's treatment plan is an example of the complexity of a pediatric stroke patient," Dr. Torres said. "Because of our stroke program and our involvement with the International Pediatric Stroke Society and pediatric research studies, we are able to provide patients with the highest level of pediatric stroke care."

Then there was that matter with Kynlee's heart. Cardiology completed an echocardiogram and formal evaluation. Vinod Sebastian, M.D., a pediatric heart surgeon at Cook Children's, performed the surgery on Kynlee in late January to complete closure of her aortopulmonary window.

"It was definitely a relief and comfort just because we had people on our side who knew what was going on and wanted to help us," Autumn said. "But also because it was all happening so fast, it was just kind of ... 'WHOA!'"

Along with everything else going on with their two daughters, major changes were occurring in the Thomas household. Autumn delivered her third child, a boy named Parker, in January 2018. Parker was staying at the Ronald McDonald House near the medical center with Darrell, who had recently been laid off from work.

The family was discharged in early February and Kynlee and her parents returned to Oklahoma. Everything was fine Friday and Saturday, but on Sunday Kynlee lost the feeling in her left side again. She was taken to an emergency room in Oklahoma where scans verified another stroke. She was transported by helicopter on that Monday back to Cook Children's. Once at the medical center, she lost movement on her right side as well.

Kynlee remained in the pediatric intensive care unit for a week. Doctors found she wasn't getting enough blood flow to her brain due to her progressive cerebral vascular disease. Pediatric specialists from Neurology, Hematology and Cardiology monitored Kynlee as they balanced her medications to treat her blood pressure and decrease her chance of another stroke.

Over the next week, doctors eventually found the right mix of medications to increase her blood pressure enough to improve the perfusion of her brain. She was monitored closely.

Kynlee also showed improvement in functionality. At the time of discharge she was able to crawl and was recommended for an orthotics consult, as well as outpatient physical and occupational therapy.

Since her discharge, Kynlee's genetic testing that had been ordered at Cook Children's, came back. She was diagnosed with an ACTA2 gene mutation, which causes people to be predisposed to vascular disease including strokes, coronary artery disease and aneurysm.  Autumn says the entire family plans to go through genetic testing for the gene as well.

Things are looking up for the Thomas family. Darrell has a new job. Their older daughter is doing well and Parker shows no sign of any health problems. Kynlee is back home in Oklahoma and doing well thanks to the medications doctors at Cook Children's diagnosed specifically for her condition.

"Kynlee is starting to walk again," Autumn said. "She hasn't been able to walk since her stroke in February. She's doing great. I'm watching her trying to feed her baby brother a Barbie doll bottle."

Autumn laughs. She welcomes this very typical, very silly problem.

They have come such a long way just to feel their own sense of normal.

Stroke and cerebrovascular diseases are within the top 10 causes of death among children and up to 70 percent of stroke survivors have residual neurological impairment.

Because the causes and symptoms are so different, treating stroke in children requires specialized training. Cook Children's Comprehensive Stroke and Thrombosis Program is one of 16 such centers in the U.S. As members of the International Pediatric Stroke Society, the Cook Children's team works with a network of other pediatric hospitals to improve stroke care worldwide.

The program is led by Medical Director Marcela Torres, M.D., a hematologist/oncologist and Co-Director, Fernando Acosta, M.D., a neurologist.

The team is committed to the early recognition, treatment and prevention of pediatric stroke through research, innovation and education.

The program allows patients to be seen by multiple specialists at once, instead of scheduling numerous visits. Patients can see pediatric sub-specialists from:

• Hematology
• Neurology
• Neurosurgery
• Neurodiagnostics
• Neuropsychology
• Interventional Radiology
• Social Worker and Child Life

Lori Lopez hoped to hear that her grandson, Mathew Westerman, was doing better and made some progress in his treatment for blood clots caused by a rare coagulation disorder. But she got more than she ever expected from the physicians overseeing her grandson’s care – Marcela Torres, M.D., a hematologist/oncologist and medical director of the Stroke and Thrombosis Program at Cook Children’s, and from Fernando Acosta Jr., M.D., a neurologist and associate medical director of the program.

“Dr. Acosta said, ‘They are gone. All the blood clots are gone,’” Lopez said. “I couldn’t believe it. I asked him to repeat it. I thought I didn’t hear him correctly. It was great. Dr. Torres told us he would no longer have to receive blood thinners, or injections, the infusions, the medication for seizures … it was a miracle. Honestly, it was a miracle to go in and hear this kind of news. I was like, ‘Oh my God. I didn’t know how to contain myself. I had so much joy and happiness with this news. It was the best news I had ever received.”

It was amazing how far Mathew, who was 1 when he became sick and is now 31 months old, had come. In October 2016, Mathew came down with a slew of health issues – two ear infections, strep throat, mono, pneumonia, asthma. He couldn’t seem to get well.

He was eating and drinking very little, causing dehydration and iron deficiency anemia. One morning, Lopez and Mathew’s mother, Catherine Arreola, noticed the little boy’s arms and feet twitching. He was having a seizure. They rushed him to the emergency room in San Angelo.

From there, Mathew was transported to Cook Children’s where he was diagnosed with thrombosis of the sinus veins of the brain. This is a type of stroke that occurs when a blood clot forms in the brain’s venous sinuses which prevent blood from being able to drain out of the brain. Brain damage can occur from the increased pressure and blood can leak out into the already damage tissue (known as a hemorrhagic stroke). This means that, unfortunately, Matthew had all three types of strokes: sinus vein thrombosis, ischemic and hemorrhagic.

Dr. Torres recognized Mathew’s symptoms as soon as she saw him and placed him on blood thinners. Mathew also needed plasma injections to help treat his rare coagulation disorder and balance the blood thinners. Mathew's coagulation disease causes him to have bleeding and clotting complications at the same time. Dr. Torres had to find the balance to not tip the scales on either side. The treatment of anticoagulant blood thinner injections and plasma injections worked and Mathew is doing incredibly well today, completely off all medication.

“I was shocked,” Lopez said. “I didn’t know children could have strokes.”

This is a common misconception. The National Stroke Association says stroke happens in about 1 in 4,000 live births and the risk of stroke from birth through age 18 is almost 13 in 100,000 children per year.

The Cook Children's Comprehensive Stroke and Thrombosis Program, one of 16 such centers in the U.S., is led by Dr. Torres and Acosta with additional support from neurosurgery, neuro-radiology, neuropsychology, a dedicated nurse practitioner, nurse, social worker and Child Life specialist. The team is committed to the early recognition, treatment and prevention of pediatric stroke through research, innovation and education. As members of the International Pediatric Stroke Society, the Cook Children's team works with a network of other pediatric hospitals to improve stroke care worldwide.

And yet, unless it happens to your child, most of us never think of children having a stroke.

Strokes in adults are often brought on by lifestyle choices such as high cholesterol, a history of smoking, too much alcohol and obesity. For children, strokes are usually caused by heart birth defects, infections such as meningitis and encephalitis, brain blood vessel abnormalities trauma and blood disorders such as sickle cell disease

“The difference with children and adults in stroke recovery, is that some children with stroke may have a greater capacity for recovery compared to adults; however, this is not the case for all children,” Dr. Acosta said. “Therefore, a comprehensive stroke program similar to that at Cook Children’s Medical Center, is focused on all aspects of stroke care including acute treatment and post stroke recovery. With the help of physical, occupational and speech therapy, childhood stroke survivors may show surprising recovery in lost function. Ongoing assessment of a child’s learning ability with recommendations for school are particularly important to a child’s success.”

“A problem with pediatric strokes, in contrast to those in adults, is that in pediatric strokes, the causes and circumstances are incredibly diverse,” said Dr. Torres. “and they are also widely different within the pediatric age groups. The potential causes of stroke vary radically from a neonatal stroke to the stroke that affects a teenager/young adult.” The team of physicians from the Stroke and Thrombosis Program at Cook Children’s Medical Center work together to give these children up to date therapy and care.

Last year, 24 kids died in the U.S. and from 1998 to present, 676 children have died.

“What’s heartbreaking is that this is a serious public health issue that is totally preventable,” said Dana Walraven, Community Health Outreach manager at Cook Children’s and Safe Kids Tarrant County Coordinator. “Every mom and dad out there must realize it can happen to you. Texas leads the nation in child heat-related car deaths.”

Parents may mistakenly think they can safely leave a child in a vehicle for a “quick” errand, but that’s simply not true. Temperatures inside the car can be 20 or more degrees hotter than the temperature outside, rising to dangerous levels in minutes. Unfortunately, it only takes a few minutes for tragedy to occur.

Safe Kids Worldwide says that heatstroke is the leading cause of non-crash, vehicle-related deaths for children.

“Heat is much more dangerous to children than it is to adults,” Walraven said. “When left in a hot vehicle, a young child’s core body temperature may increase 3 to 5 times faster than that of an adult. This could cause permanent injury or death.”

Heatstroke, or hyperthermia, occurs when the body isn’t able to cool itself quickly enough and the body temperature rises to dangerous levels.

Safe Kids recommend the “ACT” method to prevent tragedy to your child or to a child you see left in a car:

• A: Avoid heatstroke-related injury and death by never leaving your child alone in a car, not even for a minute. And make sure to keep your car locked when you’re not in it so kids don’t get in on their own.
• C: Create reminders by putting something in the back of your car next to your child such as a briefcase, a purse or a cell phone that is needed at your final destination. This is especially important if you’re not following your normal routine.
• T: Take action. If you see a child alone in a car, call 911. Emergency personnel want you to call. They are trained to respond to these situations. One call could save a life.

It’s difficult to think that as parents, we could “forget” our children, but it happens each year with no exception to socioeconomic or education level. Often times, a change in routine, a distraction along the way, or the event a child falls quietly asleep, unseen, in the back seat, allows for a parent/caregiver to “forget” and leave a child in the car.

Here are some important tips to help prevent unintentional injury to your child:

1. Dial 911 if you see an unattended child in a car. Sometimes, people don’t want to get involved or just assume the parents are on the way out. But as you read earlier, it doesn’t take long for a child to die in a hot car. If you see a child or children alone in a car without an adult, call 911 immediately.
2. Never leave your child alone in a vehicle, even for 1 minute. Windows left slightly open will not affect rising temperatures in the car.
3. Set safe habits: leave a cell phone, purse, briefcase, etc. in the back seat before driving, forcing you to always check the back seat and see a child is/is not back there.
4. Program your cell phone and/or computer to remind you to drop off your child each day.
5. Have a plan with your daycare provider to contact you within a few minutes of being late or absent. Let your daycare know that you want them to call you if you are late or you have not called in saying your child will not be in that day.
6. Teach children not to play in any vehicle.
7. Lock all car doors, even at home.
8. If a child goes missing, always check the cars and trunks.

Learn more by clicking here. Also, visit noheatstroke.org for the latest on heatstroke deaths of children in vehicles.

For more information

Every year children are rushed to the emergency room to be treated for car related injuries, many don't even involve traffic or another car. Some injuries occur without the car ever leaving the driveway. Click here for some of the top dangers to be aware of and the key things you can do to help make your car safer for your kids.

"This case just goes to show that you should never leave a child alone in a car," said Sharon Evans, Trauma/Injury Prevention coordinator at Cook Children’s. “We’ve seen children die in the winter months before. We hope people will take extra precaution and know that there's never a safe way or time to leave a child in the car.”

An autopsy shows the child's cause of death was hyperthermia, or being exposed to heat for a long period of time. According to deputies, the temperature inside the car swelled past 100 degrees.

Hyperthermia, also known as heatstroke, is the leading cause of non-crash, vehicle-related deaths for children. It occurs when the body isn’t able to cool itself quickly enough and the body temperature rises to dangerous levels.

Young children are particularly at risk as their bodies heat up three to five times faster than an adult’s. When a child’s internal temperature gets to 104 degrees, major organs begin to shut down. And when that child’s temperature reaches 107 degrees, the child can die.

"In 2015, 24 children died in hot cars across the country, which is the lowest number since records started being kept in 1998," said Evans. "It doesn't matter what the temperature is outside, if you see a child alone in a car, call 911 or break a window. Do whatever you can to help that child."

And yet, unless it happens to your child, most of us never think of children having a stroke.

“Unfortunately pediatric strokes have been ignored for a long time as a true entity,” said Fernando Acosta Jr., M.D., associate director of Cook Children’s Pediatric Neurorehabilitation and Movement Disorder Program. “This has changed over the last few years. The awareness is increasing.”

Strokes in adults are often brought on by behavior such as cholesterol, high cholesterol, a history of smoking, too much alcohol and obesity. For children, strokes are usually caused by birth defects, infections such as meningitis and encephalitis, trauma and blood disorders such as sickle cell disease.

“A problem with pediatric strokes, in contrast to those in adults, is that in pediatric strokes, the causes and circumstances are incredible diverse,” said Marcela Torres, M.D. medical director of Hematology at Cook Children’s. “For example, the physicians at Cook Children’s Stroke Clinic see children from 0 to 18 years. Additionally, the potential causes of stroke vary radically from a neonatal stroke to the stroke in a teenager/young adult.

Related Disabilities

Stroke-related disabilities is another area where childhood and adult stroke survivors can differ.

While strokes in children can be devastating, the good news is children often have a better ability to heal because of the greater plasticity or flexibility of the child’s nervous system and brain. A child’s brain is still developing, therefore it may have a greater ability to repair itself. With the help of physical and speech therapy, most childhood stroke survivors recover the use of their arms, legs and speech.

Symptoms of a stroke

The most effective stroke treatments must be given within the first three hours after stroke symptoms start. By recognizing signs of stroke in children and acting fast, you can help medical professionals lessen a stroke’s damage to the child’s brain. Use the following tool to help you think F.A.S.T.:

For more information:

Approximately six in 100,000 children are affected by stroke. Here in the U.S., it is a leading cause of death among children. Nearly 60 percent of childhood strokes occur in boys. Because the causes and symptoms are so different, treating stroke in children requires specialized training, such as what they will receive at the Cook Children's Stroke and Thrombosis Program.

While I have had previous experience addressing academic issues with my patients, my son is now in elementary school, so I am developing a whole new perspective. I still do not understand all of the intricacies of special education, but I am lucky that I have colleagues who I can contact with questions concerning my own son, as well as my patients. 

The process is incredibly complex and confusing! Despite all of my knowledge, I also admit to sometimes feeling intimidated during school meetings. I frequently help the parents of my patients locate special education advocates because it is very easy to feel that your child's needs are not being addressed they way you would like at school.  Although maintaining a strong cooperative relationship with the whole team of professionals who work with your child is important, it is also sometimes necessary to fight more for your own child. That line, however, is not always clear, and all parents need to trust their instincts.

I considered leaving pediatrics after my son's diagnosis because I was not sure that I would be able cope with developmental disabilities at work and home. However, I soon realized that I would not ever really be able to escape my new role as a "special" mom. Instead, I made the decision to embrace the situation, which eventually led me to Cook Children's and specializing in pediatric stroke in my professional and personal life. 

Although having a child who is a stroke survivor does not make me a better neuropsychologist, it does give me more insight into the day-to-day struggles that my patients and their families face. I know that, in addition to the medical and school issues, my patients and their parents may be dealing with complex family, emotional, and financial issues that go along with having a child with special needs. If you do it right, being a parent to any child is a difficult job, and we all have moments when we look back and wish we had handled a situation differently. 

I have learned that it is extremely important for parents to take care of themselves, especially when their children have complex issues, because a child's needs are best met by a healthy parent.

Related Links

• A stroke at birth - part 1
• Stroke at birth - part 2
• Stroke at birth - part 3
• Cook Children's Stroke and Thrombosis Program

About the author

Carla Hearl Morton, Ph.D., is a pediatric neuropsychologist at Cook Children's. She is a licensed psychologist with expertise in how learning and behavior are connected to the development of a child's brain structures and systems. At Cook Children's, neuropsychologists work closely with a team of neurologists andneurosurgeons to provide the best treatments and interventions that meet the individual needs of each child.

After my son came home, I entered the world of therapies, and I became a huge advocate for Early Childhood Intervention (ECI). Having attended over 400 therapy sessions with my son by the time he was 3 years old, I learned a lot about how to work therapeutically with young children, and I picked up a few useful strategies along the way. I also realized that kids (and parents!) can become "burned out" on therapy. Based upon my experience, I encourage parents to focus their energy on whatever activity is most beneficial for their child at that moment and keep the ultimate goal of achieving the child's functional potential in mind when deciding how to best allocate their time.

Although I focus on evaluating children in my professional life, I developed a new perspective on the usefulness and potential impact of evaluations on a parent. For instance, would an evaluation change the current treatment plan or simply confirm that a child has deficits? I also became personally aware of something I have heard from several parents: It is difficult to constantly be reminded of all the things your child cannot do and how it is nice to occasionally hear about their strengths. A large component of the ECI model is teaching parents how to incorporate therapeutic activities into everyday activities. While I believe this approach has immense benefit, it can also have some drawbacks, which I eventually saw in myself and I look for in those extremely attentive and motivated parents. I realized that I was often so focused on making sure everything I did with my son had a therapeutic purpose, I sometimes missed out on the fun of having a baby. Just as children need to have time for fun with no other purpose than having fun, even if your child has special needs, parents need to allow themselves to enjoy their child as simply their child. Children like my son will have numerous therapists and other healthcare providers throughout their lives, but I am the only mother he has, and all of the other roles are secondary.

Having a child who I knew from the beginning may not develop typically was also strangely freeing. Because my job is to track a child's development, I know that I would have fallen into the competitive trap of comparing when my son met each milestone, which was made worse by the fact that many of my friends having children at that time were also neuropsychologists. Because I began to expect delays, my son became free to develop at his own pace. While it is important to know if a child is falling behind so that interventions can be started early, a child's development should not be the contest it has become, and we should allow children some freedom to develop in their own unique way. 

My background in mental health also made it easier for me to acknowledge and process my own feelings of grief.  Although my son survived, it was essential to acknowledge the loss of the "perfect" child that everyone imagines while they are pregnant. That disappointment is a loss and important to honor because any intense emotions that are "buried" do not truly disappear forever. I also sometimes talk with the parents of my patients about their own symptoms of Post-Traumatic Stress Disorder, because experiencing your child's serious medical condition can definitely result in feelings that a parent needs to process. Because of my work, I also do not feel the isolation that many of my families experience. In my world, pediatric strokes are almost normal, and a child whose only healthcare provider is their pediatrician is "weird." I also continue to learn so much from my patients that I am able to use myself and pass along to other families.

Related Links:

• Cook Children's Stroke and Thrombosis Program
• A stroke at birth - part 1
• Stroke at birth - part 2
• Stroke at birth - part 3
• Stroke at birth - part 4

During my first meeting with new families, I also make sure to explain what I do and how it fits in with their other providers. Specifically, as a neuropsychologist, I assess a child’s development, thinking ability, and behavior, and I describe how those areas are affected by his or her medical history. 

My personal experience taught me that patients do not always know what kind of doctor I am or even why they have been referred to me. In addition, remembering how I felt, I try to be thorough without overwhelming my patients. I also assure them that it is normal to feel overwhelmed, especially soon after receiving a diagnosis, and let them know that I will be available for more clarification later, if needed.

While I knew more about all of the severe potential outcomes than most other parents, my professional background did provide me with the advantage of being able to escape my own emotions for at least brief periods of time. In medicine, especially when working with children, you cannot help but experience some emotion. 

However, using your best clinical judgment means that you must learn to focus on objective information without allowing yourself to become blinded by your own feelings. Although I could only manage it for brief periods of time, imagining this child as my patient instead of my son enabled me to think more clearly when my emotions became too intense.

Related Links

• A stroke at birth - part 1
• Stroke at birth - part 2
• Stroke at birth - part 3
• Stroke at birth - part 4

Six years ago, my life changed forever...

At that time, I was completing my postdoctoral fellowship in pediatric neuropsychology. I also became pregnant with my first child. Because I had some "inside" information about a few hospitals in the area after having worked in them, although a little farther from my home, I chose to deliver at a hospital with a competent staff and top-notch facilities -- a decision that likely saved my son's life and possibly my own. While in labor, I suddenly went into distress, and my son was quickly delivered via cesarean section. He was whisked away to the NICU before I was even able to see him.

Those of us in pediatric neuropsychology know the hundreds of things that can go "wrong" with a child even before they are born, and the downside of that knowledge is that it can give us very specific things to worry about. However, like everyone else who has experienced a similar situation, I did not really think it would happen to me. But it did. 

My son had a stroke during birth, he needed a ventilator to breathe, and he developed seizures. Unlike parents who question the role that their healthcare providers may have played in their child's condition, understanding that my son's stroke could not have reasonably been predicted brings me peace. I also know that I did not do anything to cause my son's stroke. This is different than the mothers of some of my patients who question every insignificant thing they did or did not do during their pregnancy because it might have played some tiny role in their child's condition.

Although most parents remember their baby's weight and length, the more important information for me was his Apgar scores and the location and extent of brain damage I saw on his imaging. Unlike most people in my situation, I did not have to ask about the potential future outcomes. I had worked with children who had severe disabilities, and I knew it was possible that my son could emerge with significant challenges. However, I was probably less frustrated whenever I was told that his future level of functioning was uncertain.

Having been on the other side of that conversation, I knew it is often difficult to predict what will happen several years in the future, particularly while a child is very young. Although some doctors like to be optimistic about a child's prognosis, others prefer to provide a more pessimistic assessment so that the parents may be pleasantly surprised by their child's better-than-expected outcome. I agree that most people prefer a definitive answer, even if it is one that they dislike, but "I don't know" is often the most honest answer to a parent's question.  

Related Links:

• Cook Children's Stroke and Thrombosis Program
• A stroke at birth - part 1
• Stroke at birth - part 2
• Stroke at birth - part 3
• Stroke at birth - part 4

About the author

Carla Hearl Morton, Ph.D., is a pediatric neuropsychologist at Cook Children's. She is a licensed psychologist with expertise in how learning and behavior are connected to the development of a child's brain structures and systems. At Cook Children's, neuropsychologists work closely with a team of neurologists and neurosurgeons to provide the best treatments and interventions that meet the individual needs of each child.