On the Pulse

Study Could Help Predict Aneurysm Risk for Kids with Kawasaki Disease

In honor of National Kawasaki Disease Awareness Day on January 26, we are sharing the story of Olivia, a 9-year-old who lives with the disease. Research at Seattle Children’s aims to improve life for children with this condition who are at risk for aneurysms.

When Olivia Nelson was 3 years old, her parents noticed that she had a fever that wouldn’t get better. They brought her to a nearby hospital, where she spent about two weeks being screened for diseases. As doctors tried to find a diagnosis, a lymph node on Olivia’s neck became swollen. Alarmed and wanting an answer, the Nelsons asked to transfer to Seattle Children’s.

“It was very frustrating,” said Olivia’s father, Trevor Nelson. “She was in the hospital for two weeks in and out, and they still couldn’t figure out what was happening.”

Soon after the family arrived at the hospital, Olivia was diagnosed with Kawasaki disease, a serious inflammatory condition affecting the eyes, lips, hands and coronary arteries. The disease affects about 7,000 children in the U.S. each year. Though the family was relieved to have a correct diagnosis, they learned Olivia had developed coronary aneurysms, the enlargement of her coronary arteries due to the persistent inflammation.

A new study funded by the National Institutes of Health (NIH) could improve the quality of life for children with Kawasaki disease at risk of developing coronary artery aneurysms like Olivia did. Dr. Michael Portman, a cardiologist at Seattle Children’s Heart Center Kawasaki Disease Clinic and researcher at Seattle Children’s Research Institute, hopes to find genetic biomarkers that will predict which patients will not respond to the standard treatment and thus have a higher risk of developing coronary artery problems.

“Olivia will have lifelong issues related to her heart and coronary arteries,” said Portman. “It’s a shame that a 9-year-old has severe heart disease that might have been prevented had we had ways to quickly diagnose and treat her disease effectively.” Read full post »


Secret to Sepsis May Lie in Rare Cell

Seattle Children’s researchers studying how the immune system responds to the early stages of a sepsis infection show how a rare type of immune cell called basophils (represented by dark purple) arrive at the infection site 24 hours after sepsis is induced in the lab.

In a paper published in Nature Immunology, scientists from Seattle Children’s Research Institute reveal how a rare group of white blood cells called basophils play an important role in the immune response to a bacterial infection, preventing the development of sepsis. Researchers say their findings could lead to better ways to prevent the dangerous immune response that strikes more than 30 million people worldwide every year.

“Sepsis is the number one killer of children globally, yet little is known about what goes wrong in an individual’s immune system to cause sepsis as it fights off an infection,” said Dr. Adrian Piliponsky, a principal investigator in the research institute’s Center for Immunity and Immunotherapies. “Without this information, it’s hard to predict who will develop sepsis or explain why sepsis causes a range of immune responses in different individuals.” Read full post »


After Life-Saving Surgery, Summer Overcomes the Odds

When Cassie Fannin and her husband arrived at her 19-week ultrasound, the newly married couple was excited to learn more about their child.  However, the first-time parents’ joy quickly turned to uncertainty when the ultrasound showed their baby’s stomach in her chest due to a life-threatening condition.

Fannin learned that her daughter, Summer, would be born with a congenital diaphragmatic hernia (CDH). Summer had a hole in the left side of her diaphragm that allowed her stomach, intestines and a portion of her liver to slip through into her chest cavity. This prevented her left lung from developing normally.

“To say it was a shock is an understatement,” said Fannin. “We went from being ecstatic about finding out we were having a girl to absolutely devastated in a matter of seconds. I left that day a completely different person. My sadness slowly turned into anger and resentment as I thought, ‘Why us? Why our baby?’”

Doctors referred the family to Seattle Children’s Prenatal Diagnosis and Treatment Program since Fannin’s baby would need surgery after birth, if she survived. The couple met Dr. Kimberly Riehle, an attending surgeon at Seattle Children’s, when Fannin was about 22 weeks along.

“My husband and I were completely lost and overwhelmed,” said Fannin. “Dr. Riehle helped ease our troubled minds during a really uncertain time. My feelings of bitterness and sorrow slowly started to melt away as I came to terms with the diagnosis and the realization that we were no different than anyone else getting a life-changing diagnosis, and I just focused on my excitement to meet her.” Read full post »


“If You Have to Get Cancer…”

Dr. Rebekah Fenton (left) and her sister Elisabeth Lucien stay upbeat as they wait to hear whether Fenton is a donor match.

At the age of 17, Dr. Rebekah Fenton’s sister, Elisabeth Lucien, was diagnosed with Hodgkin Lymphoma. It rocked her family’s world. When Elisabeth relapsed and faced a second bone marrow transplant, Fenton, now a third-year resident at Seattle Children’s, gave her sister more than just emotional support. Below, Fenton shares her experience as a bone marrow donor.

“If you have to get cancer, this is the one to get.”

That’s what the oncologist said when he told us my sister Elisabeth had Hodgkin Lymphoma.

Stunned by the diagnosis, my parents teared up. My brother Michael and I huddled next to Elisabeth in the hospital bed and bawled. Elisabeth was stoic. She was 17.

We were told that the five-year survival rate is 90%, and we believed those odds, combined with our faith, would help Elisabeth (and us) persevere. Read full post »


Teen With Melanoma Gets Back to Doing What She Loves

Ruth Garcia, 17, received treatment from Seattle Children’s for her melanoma.

During seventh-grade gym class, Ruth Garcia remembers a friend pointing out a black mole she had on her left knee. Ruth didn’t think much about it until two years ago, when she began to feel pain in her knee and noticed that the mole had grown and changed colors to gray and red.

“That’s when I started to worry more,” said Ruth, now 17.

In spring 2016, Ruth’s mother took her to see her primary care provider near the family’s home in Walla Walla, Washington. They did a biopsy on the mole, and she was diagnosed with spitzoid melanoma. Ruth was referred to Seattle Children’s Cancer and Blood Disorders Center.

A child born in the U.S. has about a one in 40 chance of developing melanoma during their lifetime. Seattle Children’s sees about six children a year who were either misclassified with melanoma or have spitzoid melanoma. The cause of spitzoid melanoma is unknown.

“I was surprised,” said Ruth. “I never thought something like that would happen to me.” Read full post »


Patients Share Their Top Resolutions to Ring in the New Year

With the countdown to the New Year almost here, On the Pulse caught up with a few of the patients who inspired our readers with their stories throughout 2018. Below, they offer their hopes, dreams and goals for the year to come.

A shoulder above his cancer, Miguel sets sights on giving back

Miguel Navarro, 19, is focused on the road ahead after treatment for a rare bone cancer.

In 2018, doctors built a right shoulder for Miguel Navarro, 19, after surgically removing an aggressive type of bone cancer known as osteosarcoma that threatened his life. Miguel spent most of the last semester of his senior year of high school in the hospital going through chemotherapy and intensive rehabilitation to regain the use of his right arm. Now, he’s solely focused on the road ahead – one that includes getting back to a hobby he’s passionate about – driving his stick shift car – and giving back to others.

“My goal for 2019 is to give back to the community that took care of me and supported me during my time of need,” Miguel said. “I’m blessed to be alive. Now, I want to be hope for someone else.” Read full post »


Therapy Dog Lee Roy Brings ‘Howliday’ Joy to Families

Lee Roy, a 12-year-old miniature dachshund, has been volunteering as a therapy dog at Seattle Children’s for over a decade. He loves the holiday season, says his owner and handler, Gordon Knight.

A few little jingles from a furry friend can go a long way during the holiday season at Seattle Children’s.

Lee Roy, a 12-year-old miniature dachshund, can be seen trotting down the halls of the hospital in festive attire made complete with tiny bells that announce his delivery of warm cuddles to patients.

“Lee Roy loves the holidays,” said his owner and handler, Gordon Knight. “It’s almost like he knows it’s an extra special time to spread cheer to patients and their families.”

Read full post »


Sam Shares His Struggle With OCD Through Candid Melodies

Sam Foster, 19, has struggled with obsessive compulsive disorder for most of his life. At first he felt ashamed of it, until he began expressing himself through music and underwent intensive treatment at Seattle Children’s. Photo credit: Christopher Nelson

When Sam Foster steps onstage, guitar in hand, he lights up the room with his confident presence.

Yet behind his poised demeanor is a painful truth that begins to unravel as he lets his lyrics flow through the microphone.

Sam has battled with obsessive compulsive disorder, or OCD, most of his life.

According to the National Institute of Mental Health, OCD is a common, chronic and long-lasting disorder. It occurs when a person has uncontrollable, reoccurring thoughts, known as obsessions, and behaviors that they feel the urge to repeat over and over, known as compulsions.

In response to the social stigma that often surrounds mental health disorders, Sam initially felt ashamed of having OCD. That was, until he began expressing himself through writing music and eventually got the treatment he desperately needed.

Read full post »


New Findings on Concussion in Football’s Youngest Players

As a naturally-talented quarterback and cornerback for the Northwest Junior Football League’s North Creek Jaguars, Andrew Ronneberg, 14, participated in the study led by researchers from Seattle Children’s Research Institute exploring concussion in football players ages 5-14.

New research from Seattle Children’s Research Institute and UW Medicine’s Sports Health and Safety Institute found concussion rates among football players ages 5-14 were higher than previously reported, with five out of every 100 youth, or 5%, sustaining a football-related concussion each season.

Published in The Journal of Pediatrics, the study summarizes the research team’s key findings from data collected during two, 10-week fall seasons in partnership with the Northwest Junior Football League (NJFL). Licensed athletic trainers from Seattle Children’s treated and recorded concussion from the sidelines at NJFL games to allow researchers to characterize concussions in this age group – from how often players sustained a head injury to factors that influenced their risk of injury.

“Measuring the incidence of concussion in grade-school and middle-school football players is essential to improving the safety of the game,” said Dr. Sara Chrisman, an investigator in the research institute’s Center for Child Health, Behavior and Development and lead author on the study. “It’s hard to determine the impact of prevention efforts if we don’t know how often these injuries occur at baseline.” Read full post »


Helping Families Navigate the Digital World

Digital devices like the iPad have only been around for about 10 years, but in that short amount of time, they have become ingrained into everyday life and research examining their impact on young children is limited.

Tune into 60 Minutes this Sunday, Dec. 9 at 7 p.m. ET/PT as Dr. Dimitri Christakis, director of the Center for Child Health, Behavior and Development at Seattle Children’s Research Institute, discusses with Anderson Cooper the evolving digital age children are growing up in today and how his research hopes to uncover the impact this new era has on a child’s developing mind.

It may seem as though digital devices and touch screens like the iPad have been around for decades, but the reality is that these devices have only been around for about 10 years. In that short amount of time, they have become ingrained into everyday life, but research on their impact is limited. What concerns researchers like Dr. Dimitri Christakis is that we don’t yet understand the effects these devices may have on young children, and so that’s why they’ve taken center stage in many of his research studies.

Christakis isn’t advocating for taking screens away from children. He simply hopes he can help parents and caregivers better understand and navigate how devices like the iPad can fit into their lives in a healthy way.

“The point isn’t that we should take away all digital devices, but rather that we should come at it from a different perspective,” said Christakis. “We should ask, ‘How can we help children live healthy lives in a digital world that they’re immersed in from birth?” Read full post »