On the Pulse

Finding Strength for the Long Haul

Kim Arthur, clinical research scientist at Seattle Children’s, holds both of her preemie daughters for the first time in May 2013.

My daughter pushes my hand away abruptly and the spoonful of food goes flying. I turn to her twin to coax her to eat a spoonful of puréed lentil soup, and she promptly gags on the tiniest lump and spits it out.

Typical case of the terrible twos? No, they are 3 and a half, and they are not just your average picky eaters. They were born prematurely at 26 weeks, and after five months in the hospital they had to get surgically placed feeding tubes in their stomachs because they weren’t able to breastfeed or bottle-feed.

And here I am, three years later, doing everything in my power to coax them to eat enough food by mouth to get rid of those tubes.

I turn away and say out loud, “I can’t do this.”

It’s not the first time I’m saying these words. I either say them or think them every time I sit down for practice meals with my girls. We are supposed to practice eating four times a day in order to get them to eat enough that we can get rid of those tubes.

Read full post »

Bringing the Benefits of Books to Patients at Seattle Children’s

Max Agnew and his mom, Brianna Agnew, eagerly read the book he received from Dr. Lisa Herzig as part of the Neurodevelopmental Clinic’s Reach Out and Read program.

From story time at preschool to reading bedtime stories, books play an important role during childhood.

“Reading together is a critical part of early childhood brain development,” said Dr. Emily Myers, a pediatrician in Seattle Children’s Neurodevelopmental Clinic. “Reading helps children build language and social skills. When stories are a shared experience between kids and their families, it helps build positive, healthy relationships.”

During her residency at the University of Chicago, Myers learned about Reach Out and Read, a national program where primary care providers give new books to children ages 6 months to 6 years during well-child visits. Providers use the books to talk with families about child development and parent/child relationships, and to observe developmental milestones and actions during clinic visits.

Seeing the benefits of Reach Out and Read inspired Myers to bring the program to the hospital.

“I started the program in the Neurodevelopmental Clinic because I was struck by how many families didn’t have books at home,” she said. “I found that there were a variety of reasons why they didn’t have books or read with their children. Reach Out and Read breaks down many of these perceived barriers, and families get a book that’s theirs to take home and keep.”

Read full post »

Seattle Children’s Becomes Nation’s First Salmon-Safe Certified Hospital Campus

Seattle Children’s recently became the nation’s first hospital campus to earn Salmon-Safe certification. The planning and work from staff like groundskeeper Meghan Fuller aims to reduce the campus’s impact on the surrounding land and aquatic plant and animal life.

Seattle Children’s philosophy on sustainability is centered around its mission to help every child live the healthiest and most fulfilling life possible.

“When we do good things for the planet, we help take care of our patients and all children,” said Colleen Groll, Seattle Children’s manager of sustainability programs. “Children are one of the most affected populations by climate change and pollution, so it’s really important that we are a leader in reducing our impact on the environment.”

That organizational mindset and Seattle Children’s longstanding commitment to the environment recently inspired it to achieve certification as the nation’s first Salmon-Safe hospital campus. The distinction is attained by meeting peer-reviewed criteria and performance standards that demonstrate environmental stewardship in areas that directly impact the urban watershed. This includes minimizing impacts of development on sensitive aquatic and land resources; and protecting downstream water quality through landscape management practices, habitat restoration and facility performance—like waste reduction and responsible water use.

Read full post »

A Mother’s Pain Motivates a Movement to Prevent Child Abuse

In recognition of National Child Abuse Prevention Month, On the Pulse shares a heart-wrenching story about a mother whose son suffered debilitating injuries at the hands of a babysitter. Through the pain and daily struggle of caring for a fully disabled child, she has become a driving force for advocacy and awareness for child abuse prevention.

What began as a normal day for Jamie Thompson, ended in a tragedy that would forever change her life.

On May 20, 2010, Thompson received an unexpected call at work. It was her 8-month-old son’s babysitter.

“I was told he wasn’t breathing and paramedics had arrived to the babysitter’s home to help resuscitate him,” said Thompson. “As I frantically left work, I received a second call — this time from my husband.”

With news from her husband that her son, Colby, was not responding, Jamie drove straight to Seattle Children’s where he was urgently transported to by helicopter.

Read full post »

Researchers Aim to Put an Agonizing Problem for Adolescents With Chronic Pain to Rest

Nicole Reeder and her mother, Susan, both participated in the I-SPY study to address Nicole’s migraine and sleep issues. Nicole is now benefiting from extended quality sleep and diminished headache pain following the study.

Days filled with pain, followed by restless nights, are more than nightmare scenarios for adolescents with chronic pain. Approximately half of all adolescents who suffer from chronic pain also have insomnia, a disorder characterized by difficulty falling asleep, staying asleep and experiencing poor quality sleep.

While there is ample research studying effective methods to treat adults who experience chronic pain and insomnia, there is very little as it pertains to adolescents. Seattle Children’s Research Institute is leading the way in changing this with an approach that focuses on empowering patients to improve their sleep to help treat their pain.

Dr. Tonya Palermo, an international expert in pediatric pain management at Seattle Children’s Research Institute, led a study recently published in the Journal of Clinical Sleep Medicine. The study showed four brief sessions of cognitive behavioral therapy for insomnia (CBT-I) led to sustained improvement in sleep quality, psychological symptoms, and quality of life for adolescents experiencing insomnia and a co-occurring physical or mental health condition such as chronic pain, anxiety or depression. Read full post »

From Transplant Patient to Aspiring Transplant Surgeon

Wade Washington underwent a kidney transplant at Seattle Children’s in 2013 and is now a student at the University of Washington with career aspirations of working in healthcare.

Growing up, 19-year-old Wade Washington knew he’d one day need a kidney transplant. The question was never if, but when.

“I never really knew what normal was,” said Washington. “I was born with chronic kidney disease, and so it was what I was used to.”

As a child, Washington’s condition was manageable, but as he grew up his condition worsened. As Washington hit puberty, his kidneys began to fail.

“Wade was born with renal dysplasia, a congenital malformation of his kidneys,” said Dr. Andre Dick, surgical director of the Kidney Transplant Program at Seattle Children’s. “Once he entered puberty, his kidneys couldn’t meet his body’s metabolic demand. We knew he’d need a transplant.” Read full post »

Makenna Raises $25K to Provide Safe X-Rays to Kids Like Her

Longtime Seattle Children’s patient Makenna Schwab excitedly waits to cut the the ribbon off the low dose radiation X-ray machine she raised $25,000 for.

Patients at Seattle Children’s are benefiting from yet another fundraising project from 14-year-old Makenna Schwab, whose fearless determination in raising thousands of dollars has allowed the hospital to purchase a special X-ray machine to help treat other kids like her.

To celebrate Makenna’s latest fundraising project, which collected $25,000 for the purchase of a 3D low dose radiation X-ray machine called the EOS, Seattle Children’s threw her a heartfelt thank you party. At her celebration, there was no shortage of smiles, laughter and hugs — all for one special teen whose enthusiasm to give is boundless.

“This was more than I ever expected,” said Makenna. “It was so great seeing everyone who has supported me over the years in one room. It made me feel really special.”

Read full post »

A Life-Saving Transplant Inspires One Family to Give Back

Elliott Kaczmarek, 3, poses with his mother, Nicole, and father, Jonathan.

This April, in recognition of Donate Life Month, On the Pulse shares the story of how a life-altering diagnosis put one family on a philanthropic journey to help others in need.

When Elliott Kaczmarek was 10 months old he came down with what his parents thought was a stomach bug.

“He wasn’t feeling well, but we didn’t think much of it at first,” said Jonathan Kaczmarek, Elliott’s father.

Just in case, the Kaczmarek’s called Elliott’s pediatrician. Initially, there was no cause for alarm. He had a mild fever and threw up a few times, and so their biggest worry at the time was dehydration.

“After a few days he started getting better,” said Nicole Kaczmarek. “Then his condition changed. He turned green and pale and was lethargic. It was then we knew he needed to go the urgent care.” Read full post »

Grateful for the Family Who Saved Her Son, One Mother Reflects on Organ Donation

A year ago, On the Pulse shared the harrowing story of 8-month-old Lincoln Seay. Lincoln was born with heterotaxy syndrome, a severe birth defect that caused his heart to develop on the opposite side of his body. In order to survive, he needed a heart transplant.

In November of last year, Lincoln was placed on the transplant list, but as each day passed, his condition continued to worsen and doctors questioned if he would make it to transplant.

“We had a list of patients and he was the one we were most concerned about,” said Dr. Michael McMullan, surgical director of heart transplantation at Seattle Children’s. Read full post »

Rap Artist Desiigner and Love Your Melon Deliver Lyrical Encouragement to Kids with Cancer

Rap artist Desiigner and seven-year-old cancer patient Ewan Lill show off their superhero artwork.

On Monday, patients in Seattle Children’s Cancer Unit were given the special opportunity to meet a rap superstar and collect some stylish swag from Love Your Melon, an apparel brand that has given more than 90,000 hats to kids battling cancer and over $2.6 million to support pediatric cancer research.

After wrapping up his Seattle concert the night before, Desiigner, best known for his Billboard chart-topping song “Panda”, made a surprise pit stop to visit kids at Seattle Children’s. During his visit, Desiigner passed out Love Your Melon hats and met with patients, giving impromptu rap performances and creating colorful superheroes.

“It’s a blessing being able to visit these kids,” said Desiigner. “I want to do what I can to make them happy, and working with Love Your Melon is helping me do that.”

Penny Lees, clinical manager of Seattle Children’s Child Life Department, was thrilled when she learned Love Your Melon and Desiigner wanted to spread their generosity to the hospital’s young cancer patients.

“The work that Love Your Melon is doing to help to raise awareness for childhood cancer is incredibly impactful,” said Lees. “Their interest in coming to the hospital to meet the kids who inspire their mission is a wonderful thing to see.”

Read full post »