On the Pulse

Two weeks before their 3-month-old son was scheduled for his second open-heart surgery, Kyle and Samantha Hatch were told their daughter likely had neuroblastoma.

Things are looking up for the Hatch family. William (left) celebrated his first birthday in May — a major milestone for children with his heart condition. While Penny still has a few months of neuroblastoma treatment, her hair is growing back and her nasogastric (NG) tube is out. Still, getting to this point has not been easy.

“We were utterly broken,” Samantha said. “But we had to pull it together for our children.”

After Penny’s tumor was discovered on her MRI, she needed a biopsy to definitively diagnose what providers suspected was cancer.

On August 11, 2020, Penny walked into Seattle Children’s hospital for the procedure. It was the last time Samantha and Kyle saw their daughter walk.

After a tumor sample was collected, Penny was discharged. But at home, Samantha said her daughter started screaming in agony. “She couldn’t stand and was in unbearable pain. I thought, ‘This isn’t normal. We’re going back in.’”

Penny was quickly readmitted to Seattle Children’s for pain management. Watching Kyle hold her in the hospital, Samantha noticed Penny was kicking her left leg while her right leg hung limp.

“It was terrifying,” Samantha said. “She couldn’t move it.”

The biopsy caused Penny’s tumor to swell and press against the nerves in her spinal cord, paralyzing her right leg. To make matters worse, the biopsy confirmed Penny did, in fact, have high-risk neuroblastoma. Read full post »

Kyle Hatch holds baby William, who was born with hypoplastic left heart syndrome (left). Three months later, Penny (pictured with her mom, Samantha) was diagnosed with neuroblastoma.

Who are your heroes? Are they exceptionally talented? Do they have superhuman abilities? Are they destined for greatness?

Or, are they ordinary people who face tremendous challenges and persevere out of love?

Kyle and Samantha Hatch undoubtedly fall in the latter category. In the past year, one of their twin sons was born with a life-threatening heart defect. Three months later, their 18-month-old daughter was diagnosed with neuroblastoma. And all of this happened during a global pandemic.

“We often talk about literary heroes, people who face adversity even when they’re unprepared,” Kyle Hatch said. “That’s what makes them brave, and that’s why our kids are some of the bravest people we know.” Read full post »

Sammy Loch began experiencing debilitating headaches in 2009. She was a sophomore in high school at the time. When she went to see her primary care provider, they diagnosed her with migraines and prescribed medication to help dull the pain. When her migraines persisted, her doctor recommended Loch get an MRI to rule out anything more insidious.

Days before the MRI, Loch got dressed in a beautiful purple gown, her curly hair bounding in tight curls just at her shoulders. She had been looking forward to the homecoming dance for weeks. She was all smiles, but the throbbing pain in her head was still there. She powered through the dance, determined to have fun. She was completely unaware her world would soon be turned upside down as she danced in the high school gym surrounded by her friends.

On Tuesday, Oct 27, 2009, Loch went in for an MRI.

“The technician was so bubbly and nice,” Loch said. “She told me about the elaborate costume she was working on because Halloween was only a few days away. I remember everything about her demeanor changed when she came back in the room after my scan. My heart sank. I knew something was seriously wrong.”

That night around 8 p.m., her family got a call. Her mother answered, repeating aloud what the voice on the other end of the line was saying. “There’s a mass. You need to go to Seattle Children’s as soon as possible.”

Everything seemed to stop as those words hung heavy in the air.

“It’s cancer,” Loch said. “I just knew it.”

Read full post »

From left to right: Jenna, Ellia, Nathan, and Zach.

For the first three years of her life, Ellia was “the kid who never got sick.”

“We never worried about her,” says Jenna Yee, Ellia’s mom. “She was always very spunky and funny and had this incredibly dynamic personality. We knew from the start she was a fighter.”

But when Ellia was 3 years old, she developed a fever and became lethargic. Jenna Yee took her to a walk-in clinic where she was prescribed antibiotics for an ear infection. A few days later, Ellia woke up with a rash on her arms and legs, and red dots on her neck.

Jenna Yee brought Ellia to their pediatrician, who sent them to Seattle Children’s Emergency Department for urgent blood testing. Ellia’s dad, Nathan Yee, left work to meet them there.

Nathan Yee and Jenna Yee both have professional experience in cancer research. Jenna Yee was a toxicologist who worked on cancer clinical trials and Nathan Yee was helping develop immunotherapy treatments for adults with leukemia and lymphoma at Juno Therapeutics.

“Hearing Ellia’s symptoms, my first reaction was utter denial,” Nathan Yee says. “I was sure nothing was seriously wrong. But driving to the Emergency Department, I realized the truth was screaming in my face. Ellia had a classic presentation of pediatric leukemia.”

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An innovative clinical trial led by Dr. Nicholas Vitanza,  a neuro-oncologist at Seattle Children’s, shows promise that delivering cancer-fighting chimeric antigen receptor (CAR) T cells directly to the brain for children and young adults with recurrent or refractory brain and central nervous system (CNS) tumors may be feasible and tolerable.

The results, published today in Nature Medicine, are the initial findings from Seattle Children’s Therapeutics’ BrainChild-01 immunotherapy clinical trial. BrainChild-01 is the first of three such trials seeking to comprehensively target all types of pediatric brain and spinal cord tumors.

Seattle Children’s Therapeutics is a unit in the research division at Seattle Children’s and is taking promising CAR T cell immunotherapies forward to the first clinical trials of their kind for children. As a novel non-profit therapeutic development enterprise, it is devoted to envisioning and testing next-generation cell and gene therapies for pediatric diseases, so children have the medicines they deserve.

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Photo courtesy of Four Oaks Photography.

On January 30, 2019, Nia Mauesby was born. To celebrate her arrival, the setting sun illuminated the Seattle skyline with bright hues of red, orange and yellow. It was one of the most dazzling and memorable sunsets of the year. As quickly as the setting sun dipped over the horizon, the winds began to shift, and the foreboding weather foreshadowed the turbulent journey that lay ahead.

“When my water broke, we had no idea what we were in for,” Reem Mauesby said.

Mauesby and her husband, Timothy, were elated for their daughter’s arrival, but the timing couldn’t have been worse. Stricken with the flu, Mauesby wasn’t able to see her baby girl for 24 hours after giving birth. When Nia was finally was placed on her chest, she felt a heavy sense of relief, but that feeling would soon be stripped away. Read full post »

This week, JAMA Pediatrics published an article by Dr. Gina Sequeira, co-director of Seattle Children’s Gender Clinic, about gender identity. In the article, Sequeira discusses what gender identity is, explains gender related terms, and offers recommendations to caregivers to help them support gender-diverse children.

Gender identity is unique to each person and is used to describe a person’s internal sense of being male, female, some of both or neither, Sequeira says. Terms like transgender and gender-diverse, may be used to describe individuals whose gender identity differs from the sex they were assigned at birth. Recent estimates suggest as many as 10% of high school aged youth have a gender identity that differs from their sex assigned at birth. Read full post »

It was during a 20-week ultrasound that Sarah Ouellette got life-changing news: Her baby would be born with a serious heart defect.

“They didn’t know if my baby would survive,” Ouellette said. “But I knew deep down that I wanted to fight for my child’s life.”

Feeling lost, Ouellette sought out a second opinion.

“I contacted Seattle Children’s, and it was there that I learned a lot more about my baby’s diagnosis. They made me feel more at ease.”

Ouellette connected with the Seattle Children’s Prenatal Diagnosis and Treatment Program, where she was introduced to Dr. Bhawna Arya, director of fetal cardiology, who guided her every step of the way.

Greyson had a diagnosis of pulmonary atresia with intact ventricular septum, a heart condition where only half of the heart has formed.

According to the Centers for Disease Control and Prevention, congenital heart defects (CHDs) are the most common types of birth defects, and babies born with these conditions are living longer and healthier lives. CHDs affect nearly 1% of, or about 40,000, births per year in the United States.

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When the COVID-19 pandemic first led to a pivot to online instruction in the spring of 2020, the Science Education Department at Seattle Children’s Research Institute was forced to hit pause on in-person programming.

However, thanks to an investment in high-quality equipment and the creativity and adaptability of the Science Education team, the programs have been able to thrive in a virtual format.

Transition to virtual

To pivot to a virtual format, the team purchased a video camera and lighting equipment to make the lessons feel professional, says Dr. Amanda Jones, senior director of education initiatives at Seattle Children’s Research Institute. Read full post »

Seattle Children’s researchers have published a study that has uncovered a deeper understanding of why people who have had mild cases of the novel coronavirus 2019 (COVID-19) lose functional antibodies within a few months.

Last year, while seeing the bulk of research analysis focused on severe cases of COVID-19, a team of researchers led by Seattle Children’s Research Institute’s Center for Global Infectious Disease Research, the largest pediatric infectious disease research center in the country, sought to evaluate the immune responses that occur after people recover from more mild cases of COVID-19. Mild cases, researchers say, are the most common type of cases. Published in Cell Reports Medicine, a team of researchers found that while antibodies did persist over time, they were not the functional antibodies needed to protect someone from reinfection.

The study evaluated a cohort of 34 adults, ranging in age from 24-74 for up to six months. It characterizes antibody responses to infection and does not investigate T cell or vaccine responses. Antibody responses to vaccination are likely to behave very differently and have different longevity.

At first, researchers found a sustained and maturing presence of an antibody called Immunoglobulin G (IgG) among participants, which should normally mean protection from infection of a virus would improve, says Dr. Noah Sather, a principal investigator at  Seattle Children’s Research Institute and associate professor at the University of Washington.

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