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.

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