On the Pulse

The Softer Side of Surgery, Doctor Designs Personalized Dressings for Patients

Cameron Star Bandage

Cameron shows off his star bandage alongside his stuffed animal’s matching bandage.

No kid wants to have surgery. It’s not a fun experience – but Dr. Kimberly Riehle, an attending surgeon at Seattle Children’s Hospital, does her best to help reassure patients and families that everything will be okay by creating custom bandages shaped like hearts, trains and even fish.

A personalized touch

“I think the designs make the kids feel special,” said Riehle. “When we see kids, typically something unexpected has happened to them. They are seemingly healthy and then something happens that causes them to need surgery. These situations can be really stressful for parents and families. Personalizing the dressings is just one way I can help to make the experience better for them.”

Each year, Seattle Children’s surgical teams – from craniofacial to orthopedics – perform about 13,000 surgeries, double the number of any other institution in the region. But for Riehle it’s about more than the sheer number of surgeries she performs; it’s about caring for each individual patient.

The personalized bandages are one way Riehle can help children who need surgery – and their families – cope with the experience. Read full post »

The Other Side of the Patient Bed: From Pediatrician to Frightened Parent

Dr. Katie Williams, a pediatrician and urgent care specialist at Seattle Children’s Bellevue Clinic and Surgery Center, lived every parent’s worst nightmare when her 1-month-old son turned gravely ill one Saturday evening in January. Here, Williams shares how her infant escaped the grip of death and how she gained a new level of gratitude thanks to her colleagues’ expertise in pediatric life support.

Dr. Katie Williams with her son, Grayson

The Saturday that is forever burned in my memory started out typically. My husband David DeTerra and I took our three kids — 4-year-old Evan and 1-month-old twins Elisabeth and Grayson — to an afternoon birthday party for a friend. On the way home, we stopped for takeout and looked forward to a relaxing evening at home. I remember sitting in the car thinking how glad I was that the twins had reached the 30-day mark, because that’s the point where infants are less likely to get serious infections.

What happened next came totally out of the blue.

Grayson started breathing funny and he had this strange rhythmic cry. I figured he was hungry and wanted out of his car seat to nurse. When we got home, David noticed he felt cool and clammy and his face looked pale. We both tried to feed him, but he wouldn’t eat. His eyes, normally so alert, couldn’t connect with us at all. When his tiny body went limp, we frantically called 9-1-1. Read full post »

World Prematurity Day: Harnessing Science to Address Preterm Birth

Photo courtesy of Paul Joseph Brown/GAPPS

Photo courtesy of Paul Joseph Brown/GAPPS

When you see pictures of tiny preterm babies, you likely marvel at how they fit in the palm of a hand, or how a wedding ring can slide up their arm and reach their elbow. What you may not consider is the lifelong toll premature birth can have on a person – if they survive it at all.

New research shows that for the first time ever, preterm birth is now the leading cause of death for all children under age 5 around the world.

More than 15 million babies are born too soon every year, and nearly one million of them don’t survive infancy. Those who do survive are often faced with lasting health issues such as cerebral palsy, developmental delays, or respiratory, vision and hearing problems. The burden is magnified in many developing countries, where world-class neonatal intensive care units, let alone a basic level of healthcare, are not available.

Dr. Craig Rubens, executive director of the Global Alliance to Prevent Prematurity and Stillbirth (GAPPS), an initiative of Seattle Children’s, says a larger, coordinated research effort is critical to lowering the number of babies born preterm. Read full post »

Patient Chef Works to Change Perception of Hospital Food

In January, Seattle Children’s brought on Ryan Garcia to serve as the hospital’s first chef focused exclusively on patient meals. With more than 25 years of experience in the food service industry, Garcia’s goal is to change the perception of hospital food by working with patients and their families to create natural, healthy dishes based on familiar, home-cooked meals. He also plans to focus on using organic, locally-sourced foods that come from the hospital’s organic garden and broader community.

“The meals we create are about so much more than the recipe — it’s about making food part of the patients’ overall healing experience,” Garcia said. “If our patients are happy and enjoying what they eat, that’s also one less thing parents have to worry about.” Read full post »

Marketing Food and Beverages to Children is Big Business; Is it Bad for Your Kids?

Kids and TelevisionIt’s a serious business to win over the minds and taste buds of youth today. In fact, the food industry spends about $1.8 billion annually on food marketing to children and adolescents, according to a review by the Federal Trade Commission. In 2006, the Children’s Food and Beverage Advertising Initiative (CFBAI) was launched by food companies to promote healthier dietary choices and healthy lifestyles in advertisements. But it may not be enough, says Dr. Mollie Grow, a pediatrician at Seattle Children’s Hospital.

In an article in the Journal of the American Medical Association (JAMA) Pediatrics, Grow weighs in on a study published this year about how children perceived television advertisements by two national fast food chains. According to Grow, the study shows there is room for improvement when it comes to how the food industry advertises healthier dietary choices. Many fast-food chains have agreed to standards when advertising to kids, but it seems they are not always clear to children.

In the study titled “Children’s Reaction to Depictions of Healthy Foods in Fast-Food Television Advertisements,” researchers found that advertisements don’t adequately depict healthier options to children. Many children in the study couldn’t correctly identify the healthy food items in the advertisements. Furthermore, 81% of the children participating in the study said they remembered seeing french fries in an advertisement, when the food that was shown was actually apples. That has led researchers to beg the question: Can more be done by advertisers to influence children’s dietary decisions and curb childhood obesity? Read full post »

Moms Help Fill the GAPPS Repository to Make Healthier Pregnancies

Rohit Nariya, research associate at GAPPS, adds preservative to hundreds of vials before they're added to the collection kits.

Rohit Nariya, research associate at GAPPS, adds preservative to hundreds of vials before they’re added to the collection kits.

What does a pregnant woman in Yakima have to teach a researcher at St. Louis University? How can a Seattle woman’s healthy, full-term pregnancy impact future pregnancies in Europe or Africa? The answers are closer than you might think.

Over the past seven years, the team at the Global Alliance to Prevent Prematurity and Stillbirth (GAPPS) – an initiative of Seattle Children’s – has worked to increase awareness, collaborations and research in support of their mission to improve the health of moms and babies worldwide.

One big gap (pun intended) the GAPPS team noticed early on was that a collection of widely-accessible, high-quality, pregnancy-related specimens (like cheek swabs, amniotic fluid and cord blood) for researchers didn’t exist. At the time, researchers who needed these types of specimens had to develop their own methods to collect and store them – a time-consuming and costly process.

Enter the GAPPS Repository: a biobank of pregnancy-related specimens that eligible researchers worldwide can access for their research projects. Read full post »

Study Shows Kids with Autism Benefit from Parent-Led Language Intervention

iStock_000003157241SmallChildren with autism often experience communication challenges. It’s crucial for patients to receive treatment interventions during early development to prevent long-term deficits, but it’s often difficult for them to access the specialists they need.

As a clinical psychologist in Seattle Children’s Autism Center, Dr. Mendy Minjarez knows how high the demand is for therapists who can address core autism features, such as language deficits.

“Even if patients are lucky enough to see a behavior intervention specialist, their treatment is limited to the appointment time,” Minjarez said. “For years, parents would say to me ‘I wish I could practice with my child at home.’”

Minjarez made that wish a reality in 2007 by developing a new way to offer Pivotal Response Training (PRT), which focuses on teaching parents to improve their child’s language skills by using common motivations in daily life. PRT had previously been taught during individual therapy sessions with a clinician, the parent and the child, but Minjarez’s model aims to serve many more families by teaching parents in a group setting.

Now, Minjarez has collaborated with Lucile Packard Children’s Hospital Stanford researchers to publish a study testing the group model of PRT.  She discovered most parents effectively used the training and their children showed significantly more language progress than those who did not attend the group training. Read full post »

Studies Aim to Improve Survival Rates for Kids with Adult Cancers

research_fileWhen speaking about breast and colorectal cancers, typically you wouldn’t think of children. These cancers are considered adult conditions and rarely occur in individuals under the age of 21. But according to two new studies from the National Cancer Data Base (NCDB), although these diseases are rare in kids, they do still occur.

“The thought that kids even face these diseases is surprising,” said Dr. Morgan Richards, research fellow in the division of general surgery at Seattle Children’s Hospital. “But that’s why it’s important to study such diseases.”

According to investigators at Seattle Children’s Hospital and Maine Medical Center, who presented this week at the 2014 Clinical Congress of the American College of Surgeons, the studies highlight the need for an increased awareness among pediatric clinicians that these cancers do occur in children and a stronger collaboration between adult clinicians and pediatric care providers to increase survival rates. Read full post »

Stones Clinic Helps Counter Rise of Kidney Stones in Kids

Ada Zeitz, 2, tries to have some fun at her Kidney Stones Clinic visit while her mom and dad meet with the multidisciplinary team.

Ada Zeitz, 2, tries to have some fun at her Kidney Stones Clinic visit while her mom and dad meet with the multidisciplinary team.

When you hear the term, “kidney stones,” you probably wouldn’t think a blue-eyed, blond-haired 2-year-old is someone who suffers from the painful condition. After all, kidney stones are most common in adults age 40 and older.

Yet over the past decade, prevalence of kidney stones in kids has increased, says Dr. Joel Hernandez, nephrologist at Seattle Children’s Hospital.

It’s this increase that prompted creation of a new clinic at Seattle Children’s – one that exists solely to diagnose and treat kids with kidney stones. Read full post »

Hunting for a Cure: Researcher Brings New Muscular Dystrophy Treatments to Seattle

Erik Twede was just 3 years old when he was diagnosed with

Erik Twede was just 3 years old when he was diagnosed with Duchenne muscular dystrophy, a fatal genetic disorder that causes progressive muscle weakness.

The day doctors told Karen Twede her son Erik had Duchenne muscular dystrophy, she went straight home and searched for the mysterious illness in her medical dictionary. She read: “A progressive muscle disease in which there is gradual weakening and wasting of the muscles. There is no cure.”

“My breath caught in my throat,” Twede said. “It was a terrifying reality to accept.”

Thankfully, several clinical research studies being offered at Seattle Children’s Research Institute are giving hope to parents facing the same devastating diagnosis.

The studies, led by Dr. Susan Apkon, director, Seattle Children’s Department of Rehabilitation Medicine and an investigator in the research institute’s Center for Clinical and Translational Research, offer promise to better treat, or even cure, Duchenne, through the use of new therapies with fewer side effects.

“When I meet with patients with Duchenne and their families today, we have a very different conversation than we might have had 10 years ago,” Apkon said. “Today I ask my patients ‘What do you want to be when you grow up?’ because I believe in their future. I’ve been able to look ahead and see the research being done nationally and internationally and there seem to be treatments on the horizon.” Read full post »