On the Pulse

Raising the Bar

Rini Olson, now 5, was dying in a Chinese hospital when she was adopted by Andrea and Eric Olson and brought home to the United States with hopes for a heart transplant. Dr. Erin Albers (left) and transplant nurse coordinator Pam Hopkins are part of the team that guides Rini and her parents through the follow-up care that keeps her new heart healthy.

When Andrea and Eric Olson adopted their daughter, Rini, from China, she was 22 months old and needed a heart transplant. But pediatric heart centers across the United States told the Olsons, who live in Salem, Ore., that Rini was too malnourished to endure the operation.

“We got ready to say goodbye,” Andrea Olson remembers. “Then Seattle Children’s called and said they would consider Rini for a transplant. I couldn’t stop crying — I could tell from Rini’s eyes that she didn’t want to give up.”

Families travel from around the world to Seattle Children’s Heart Center because, like the Olsons, they’ve been told their child is too medically complicated or too fragile to survive a transplant. Seattle Children’s is using innovative approaches to expand the boundaries of heart transplants and give these families hope. The center’s survival rates are among the nation’s best — more than 92% of patients live for more than three years after heart transplants.

“Sometimes you have to try something new or a child is going to die,” says Dr. Michael McMullan, who directs the transplant surgery program. “Those kids deserve a chance to live, and we believe we have the expertise and experience to be successful even when we’re doing something that hasn’t been done before.” Read full post »

Patient Families SHIFT to Peer Advisors as Weight Management Treatment Study Progresses

Heather Armstrong and her daughter, Lauren, saw positive results from their time in the SHIFT study last year. Armstrong is now a SHIFT peer interventionist helping other families.

Heather Armstrong made a commitment to a healthier lifestyle when she volunteered herself and her 8-year-old daughter, Lauren, for a weight management treatment study at Seattle Children’s Research Institute.

For five months, Armstrong and Lauren attended weekly sessions in the Success in Health: Impacting Families Together (SHIFT) study that provided guidance and education to help them reach and sustain better eating and activity behaviors and ultimately better weight management. The sessions focused on healthy eating, supporting children throughout behavior changes, improving the home environment for physical activity and healthy eating, building confidence and incorporating more physical activity into family life. Read full post »

Sneaky Sodium is Hard on the Heart

Nearly 90% of kids in the U.S. consume too much sodium, putting them at risk for high blood pressure in childhood, and heart disease and stroke later in life. While everyone needs a small amount of sodium to help control the fluid balance in the body and allow nerves and muscles work, too much sodium is harmful and is dubbed the ‘silent killer.’

In honor of American Heart Month, On the Pulse asked Kirsten Thompson, a dietitian in Seattle Children’s Pediatric Hypertension program, to provide insight into how kids are consuming so much sodium.

“When I ask patients and families about sodium intake, they often say that they don’t eat too much sodium because they don’t add salt from the salt shaker to the foods they eat,” said Thompson. “They’re often surprised to learn that sodium is actually hidden in a lot of foods that we wouldn’t normally think of as salty.” Read full post »

HIV Immunotherapy Study Shows T-Cells Can Kill, Resist HIV Simultaneously

Seattle Children’s researchers developed a T cell that can both kill and resist HIV. On the left is a microscopic image of thousands of HIV-infected cells after being exposed to normal, unedited T cells. On the right is a microscopic image of HIV-infected cells after being exposed to edited T cells. The clumping in the image to the right indicates HIV positive cells are being killed by the edited T cells.

HIV is a cunning virus—it infects, takes over and shuts down the body’s T-cells that fight infection. This leaves HIV-positive individuals without immune power to fight off many types of infections, even a common cold, which can become deadly.

Researchers at Seattle Children’s Research Institute published two studies in the journal Molecular Therapy that could lead to a more permanent treatment that uses the power of the immune system to fight off disease. With the use of gene editing, they developed a T-cell that can both kill and resist HIV simultaneously, a promising step forward in the development of HIV immunotherapy.

“Our goal is to develop an HIV treatment that is more permanent than a daily drug,” said Dr. David Rawlings, director of the Center for Immunity and Immunotherapy at Seattle Children’s Research Institute. “In the future we hope this treatment would eliminate the need for HIV drugs that have negative side effects on people who need them to stay alive.” Read full post »

Tiny Hearts, Faster Healing: Seattle and Indonesian Cardiologists’ Easy Fix Improves Heart Surgery Recovery in Babies

A pediatric heart surgery patient at the National Cardiovascular Center hospital in Jakarta, Indonesia. Researchers found giving babies thyroid hormone during and after heart surgery got them off ventilators faster.

Babies who need heart surgery in the U.S. have access to advanced healthcare and doctors that get them into the operating room quickly, allowing them to fix problems early and give the babies a chance at healthy growth.

But in developing countries, babies wait longer for surgery for a variety of reasons: Fewer qualified doctors, late diagnoses of heart conditions, and capacity issues at hospitals that cannot accommodate all the infants who need surgery. As a result, babies with heart conditions in developing regions of the world are often sicker and weaker when they finally have surgery.

Dr. Eva Marwali, a pediatric cardiac intensivist at the National Cardiovascular Center Harapan Kita in Jakarta, Indonesia sees this happen to babies in her country. She teamed up with Dr. Michael Portman, a cardiologist at Seattle Children’s Research Institute, and in a study out in the Annals of Thoracic surgery, they identified an easy, economical way to speed recovery for babies at her hospital who need lifesaving heart surgery. Read full post »

Dr. Ben Danielson Honored for an Innovative Approach to Caring for Children

Danielson was recognized by the Simms/Mann Institute as a recipient of the 2017 Whole Child Award.

Today, Dr. Ben Danielson, senior medical director of Seattle Children’s Odessa Brown Children’s Clinic (OBCC), was honored by the Simms/Mann Institute as a recipient of the Whole Child Award, a national recognition that honors extraordinary leaders in medicine and education. Launched in 2015, the Whole Child Award is given to individuals who are focused on a whole child approach to caring for children and their families.

On the Pulse sat down with Danielson to talk about this achievement and how OBCC, a community clinic located in Seattle’s Central District that provides medical, dental, mental health and nutrition services to families, approaches caring for the whole child. Read full post »

A Mother’s Intuition Leads to Picture-Perfect Treatment of Eye Cancer

The abnormality in Julia De Vos’ left eye was later identified as retinoblastoma. Julia’s mother, Amanda De Vos, took the photo and was quick to alert the family pediatrician when she noticed the white dot.

Some pictures are worth much more than a thousand words.

Like the picture Amanda De Vos took of her daughter Julia, which helped to identify retinoblastoma, a rare eye cancer that was stopped in its tracks with an innovative treatment at Seattle Children’s.

De Vos, a professional photographer, was reviewing shots she took of her 15-month-old identical twin daughters, Julia and Jemma, when a photo of Julia caught her attention. The image shows an excited toddler in dinosaur pajamas, her open mouth featuring three new bottom teeth.

An off-white glow in Julia’s left eye gave De Vos pause. It was an abnormality De Vos hadn’t seen previously in any of the thousands of pictures she had taken. The pupil in Julia’s right eye had a red dot in it—a common photographic nuisance that results when light from a camera flash reflects off the retina in the back of the eye. Read full post »

New Use of Old Surgical Tool Transforms Brooklyn’s Life

Brooklyn Clasby, now 10 years old, received a Potts shunt at the age of 8.

In February 2010, Jennica Clasby knew something was wrong when her 3-year-old daughter, Brooklyn, said she needed to sit down because her “heart hurt.”

“I thought it was really odd to hear that coming from a 3-year-old,” Clasby said. “I sat her down on my lap, put my hand over her heart and I was terrified to feel that it was practically pounding out of her chest.”

Clasby and her husband Brandon, who lived in Colorado, rushed Brooklyn to the emergency room where they were shocked to learn she was in heart failure. Brooklyn was diagnosed with pulmonary hypertension (PH), or high blood pressure in the lungs. PH is a chronic condition that occurs when the muscle in the wall of the blood vessels and arteries in the lungs thickens and cannot properly expand to receive blood coming from the heart. This causes resistance to the heart, which then works harder to pump the blue blood in need of oxygenation into the lungs. Over time, the strain on the heart can cause it to fail.

“Our world was turned upside down,” Clasby said. “It’s incredibly hard to hear that your daughter has an incurable, lifelong disease that will progressively get worse. It changed the way we lived and gave us a new appreciation for life.”

Read full post »

Seattle Children’s Sets GUINNESS WORLD RECORDS™ Title for DNA Experiment at Groundbreaking for New Research Building

Students from Sunrise Elementary in Puyallup, Washington participate in the GUINNESS WORLD RECORDS attempt for most people conducting a DNA isolation experiment simultaneously.

Seattle Children’s Research Institute succeeded in a GUINNESS WORLD RECORDS attempt for the most people conducting a DNA isolation experiment simultaneously. The record was set to celebrate the groundbreaking for Seattle Children’s newest pediatric research facility, Building Cure, which will be located in Seattle’s South Lake Union biotech corridor at 1920 Terry Ave. It is scheduled to open in 2019.

The GUINNESS WORLD RECORDS title was set by more than 300 people at the building’s future location. Several hundred volunteer participants isolated the DNA of a strawberry simultaneously, including elementary school students from Sunrise Elementary in Puyallup, Washington. Read full post »

Priscilla Lives by a Simple Motto and Doesn’t Let Cerebral Palsy Slow Her Down

Priscilla, 7, has always been encouraged to try new things. Although she was diagnosed with cerebral palsy at 1 years old, she hasn’t let it slow her down. She lives by the motto: The sky is the limit.

Throughout 7-year-old Priscilla Campos’ life, she’s been empowered by her parents to try new things. Her mother, Shannon Cruz, says their family lives by a simple motto: The sky is the limit.

It’s a lesson Priscilla has taken to heart. She’s always believed she could do anything, and she’s proven she can.

“She reaches for the sky,” said Ruben Campos, Priscilla’s father. “There are no limitations. I always tell her she can do anything, and then she does. She’s incredible.” Read full post »