On the Pulse

I was in middle school when my mental health started deteriorating. Every day I would hide under tables, cover my ears, or hit my head. I would lash out at anyone who tried to help me. I was anxious 24/7. But I kept denying what was happening. I told myself that I was fine, that I was just going through a rough couple of days. Then days turned into weeks, and weeks into months.

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Marilee Killpack describes the birth of her fourth son, Abram, as “magical.”

After a typical, full-term pregnancy, Abram was born in Provo, Utah, weighing 9 pounds. He seemed to be healthy and strong, with one exception: He had petechiae all over his body — red dots that appear on the skin when tiny blood vessels break.

Providers suspected the marks were bruises from his quick birth, but blood tests revealed his platelets were extremely low and his immune system was not making enough antibodies to fight infections.

Abram was taken to the neonatal intensive care unit at his local hospital for platelet and immunoglobulin infusions. Still, his blood counts continued to drop. The family was transferred to a nearby children’s hospital where providers determined he had mononucleosis, which they suspected was causing his immune deficiency.

“They said he would be fine in a few months and sent us home,” Killpack remembers.

But Abram was not fine. He developed severe, uncontrollable eczema when he was 3 weeks old.

“His body was shredded,” Killpack said. “We tried everything — lotions, oils, anything we could think of — but nothing worked. He was screaming; he was in so much pain.”

When providers saw Abram’s skin, they immediately sent a sample of his blood for genetic testing. They suspected he might have a rare, life-threatening disorder called Wiskott-Aldrich syndrome (WAS). Read full post »

Dr. Markus Boos, a pediatric dermatologist at Seattle Children’s, with one of his sons.

Climate change, a result of elevated carbon dioxide levels, leads to environmental changes that affect everyone, says Dr. Markus Boos, a pediatric dermatologist at Seattle Children’s. The 20 warmest years on record globally all occurred in the last 22 years, with the past 5 years being the warmest. While natural disasters such as wildfires, hurricanes and other forms of extreme weather can cause lasting physical, mental and emotional harm to all people, specific populations are more adversely affected. This includes the elderly, individuals with disabilities and children.

These major environmental changes put children’s health and safety at risk, according to the American Academy of Pediatrics. Recent reports have estimated children under age 5 bear 88% of the burden of disease due to climate change. On the Pulse talked to Boos about how climate change impacts skin conditions in children, and how parents can protect their kids from ultraviolet (UV) radiation. Read full post »

The author with her daughter, Mariana, 7. Mariana has a rare disease called Pfeiffer Syndrome.

Often in life we have a vision of what we want or imagine our lives to be like, but along that journey, life presents obstacles and opportunities for us. It shapes us and makes us who we are.

My own journey started with its own twists and turns. I was born in Medellin, Colombia and moved to Seattle with my mom at the age of 7. Two months later I got sick. I couldn’t stop throwing up and had a hard time waking up. A year after being hospitalized on and off at Seattle Children’s, I was diagnosed with a cavernous malformation and had brain surgery two months later. My chances of surviving the surgery were small. In Colombia I would have died, but Seattle Children’s saved my life.

When I gave birth to my daughter, Mariana, 27 years later, I never imagined that she too would face a serious medical condition. Much of my life was impacted by my medical condition, but it was nothing compared to what our family would experience as we learned Mariana had an incurable rare disease. It was the beginning of a life-changing journey for our family. Read full post »

For 7-year-old Lucy Watters, her mother, Nicole Watters, and their family, Seattle Children’s is like a second home. They are at the hospital often, and their care team has become like an extension of their family. Compared to their usual visits, their current stay, 23 days in the Cancer Care Unit, doesn’t seem that long.

“As hard as it is to be here, we know we’re in good hands. We have family within the hospital walls,” said Watters. “When we walked in that first day, Lucy was smiling, like she was going on vacation.”

It breaks Watters’ heart, but also gives her relief.

In the beginning of June, their family received devastating news. Lucy relapsed again, for the fourth time. Lucy was first diagnosed with acute lymphoblastic leukemia at 3 years old. Since then, for nearly half her life, she’s been in and out of the hospital for treatment.

“She doesn’t remember life before cancer,” Watters said.

Through everything, they hold onto hope, and live by a simple motto.

“Stay in today,” Watters said. “We take it one day at a time and live in the moment.”

Thursday was a good day, filled with so many special moments. They got to go home and received a special send-off from one of Lucy’s biggest fans, Alysha Clark of the Seattle Storm. Read full post »

Summer school is in session for researchers at Seattle Children’s Research Institute, and although there are text books and a final exam, very little else about the biology course taught by Dr. Philip Morgan and his fellow scientist and wife, Dr. Margaret Sedensky, is business as usual. That’s because their students are Tibetan monks and their classroom is at a monastic university in southern India. Read full post »

Dr. Andy Shih is studying how tiny strokes called microinfarcts develop and impact the developing brain.

Strokes come in many shapes and sizes. In children and adults, strokes often present sudden limb or facial numbness, confusion and dizziness.

But some strokes that cause clots to develop in the small blood vessels of the brain don’t exhibit any symptoms at all. Studies have shown that hundreds to thousands of these small, asymptomatic strokes, known as microinfarcts, likely occur over the course of decades in adult brains and may contribute to cognitive decline as we age. Even less is known about the occurrence and consequences of microinfarcts in young, developing brains.

Enter Dr. Andy Shih, principal investigator at Seattle Children’s Research Institute’s Center for Developmental Biology and Regenerative Medicine. Shih hopes to solve the mystery of microinfarcts by using advanced optical imaging — modeling them in the lab and visualizing their effects in real-time. On the Pulse sat down with Shih to learn more about his work and how he’s applying his discoveries from studying dementia in aging brains to understanding how blood vessels and clots first emerge in the brain. Read full post »

Mango, fruit and crème are just a few of the nicotine flavors that may be drawing kids and teens to electronic cigarettes and vaping. In recent years, rising rates of youth in the United States using e-cigarettes has grown into a public health epidemic.

According to the U.S. Centers for Disease Control and Prevention (CDC), e-cigarette use jumped 78% among high school students from 2017 to 2018. Last year, more than 3.6 million middle school and high school students in the U.S. used e-cigarettes. The products’ surge in popularity led the Food and Drug Administration to restrict fruit and candy flavored e-cigarettes at gas stations and convenience stores in 2018.

“I have absolutely seen an increase in teens using e-cigarettes, and so have hospitals and schools across the country,” said Dr. Yolanda Evans, associate professor of pediatrics in adolescent medicine at Seattle Children’s. “With these highly addictive products becoming more popular and readily available, it’s important for parents to know what e-cigarettes are and how to discuss vaping with their children.” Read full post »

Luella Konsmo is an avid fan of superheroes, and so when she broke her arm at the end of May and needed a cast, she knew exactly what she wanted.

Samantha Konsmo, Luella’s mother, said her love of superheroes started with her older brother, Cruz.

“He loves superheroes, and she loves him,” Konsmo said.

Luella and her family were enjoying a stroll around Green Lake in Seattle, when Luella fell and broke her arm. Their day of fun in the sun turned into a trip to Seattle Children’s Emergency Department.

When doctors in the Emergency Department asked Luella what color cast she wanted, the beaming 5-year-old didn’t hesitate. She said she wanted a “Thanos arm.” Read full post »

Last week, 18-year-old Michael Albrecht walked down the hall of Seattle Children’s Cancer Care Unit in his purple cap and gown. His tassel and honor cords swaying as he walked with his IV pole by his side. He couldn’t attend his high school graduation because was undergoing cancer treatment, and so his care team put on a special graduation just for him at Seattle Children’s. It wasn’t how he envisioned his graduation, but as he always does, he looked on the bright side of things. He had made it.

He posed for photos, high-fived his nurses and doctors and received a mock diploma his child life specialist created for him. It wasn’t the real thing, but the experience was close enough to bring a smile to Michael’s face. The simple ceremony wasn’t the only thing his care team had planned though. They had more in store to celebrate such a monumental milestone. Read full post »