Heart Center

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.”

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Ewan Hart, 2, with his sister. Ewan was diagnosed with Kawasaki disease after he was hospitalized at Seattle Children’s when he developed a sudden fever that would not come down.

Some parents feed infants and children soy formula and products because they believe they are a healthy alternative to dairy, especially if a child is lactose intolerant. But new research published in the journal Nutrition Research shows that high soy consumption in infants and young children leads to an increased risk of Kawasaki Disease, an autoimmune condition that causes inflammation in arteries and can result in irreversible and devastating damage to the heart.

Kawasaki disease affects about 7,000 infants and children in the U.S. each year. Although the disease can occur in children of all races, those of Asian descent are at substantially higher risk.

“It’s concerning that high consumption of foods like tofu, soy formula, edamame and other soy products is a risk factor for Kawasaki disease,” said Dr. Michael Portman, a pediatric cardiologist and researcher at Seattle Children’s Research Institute who was the lead author of the study. “This should be a concern for all families with young children, but particularly those of Asian heritage because their traditional diets use a lot of soy.” Read full post »

Bella Anderson, 18, missed nearly two months of her senior year waiting for a heart at Seattle Children’s.

Isabella (Bella) Anderson, 18, was running out of time. Her heart was failing and doctors didn’t know how much more it could withstand. She needed a change in luck and some good news.

Finally, Bella got just that: a surprise and the news she’d been waiting for.

A long road to transplant

At only 10 years old, Bella went to see the doctor for strep throat, but doctors found something more alarming: a heart murmur. She was diagnosed with hypertrophic cardiomyopathy, a disease of the heart muscle’s wall.

From that day forward, she was monitored closely by Seattle Children’s Heart Center, one of the best pediatric cardiology and cardiac surgery programs in the U.S., and the top-ranked program in the Pacific Northwest, according to U.S. News & World Report.

Unfortunately, as time progressed, so did her heart condition. Cardiomyopathy reduces the heart’s ability to pump blood effectively and can lead to congestive heart failure.

Slowly, her heart began to fail. Read full post »

At only 8 months old, Lincoln Seay, has spent the majority of his short life inside the walls of hospitals. This week, however, marks the start of a new chapter: he is finally going home, or at least he’s one step closer to his home back in Alaska.

Only 21 days after receiving a life-saving heart transplant at Seattle Children’s Hospital, Lincoln was discharged from the hospital with a new heart and a new lease on life.

“We’re so excited,” said Rob Seay, Lincoln’s father. “As a family it’s been a big celebration since we were discharged. We’re finally all under one roof again. It’s a tremendous blessing.” Read full post »

Just shy of his third birthday, little Bowen Warren has already lived up to his name, which literally means “little warrior, small victorious one.” He’s had to overcome a lot in his short life, and that journey has been as his name would suggest: a battle.

In February of 2013, Emily Warren was 29 weeks into her pregnancy when her water broke unexpectedly. Until that point, she had no reason to suspect there was anything wrong with her baby. She could have never imagined the nightmare that was about to unfold. Read full post »

In honor of American Heart Month, On The Pulse asked Dr. Jason Deen, a cardiologist at Seattle Children’s, to provide tips for families who want to make heart-healthy choices.

Deen works with families who have children who were born with heart problems, and also cares for families who have children who are obese, most of whom have high blood pressure and high cholesterol. He conducts research to learn about differences in the heart health of minority populations.

“While the rates of heart disease are leveling off for the population as a whole, certain ethnic and racial minorities are seeing continued increases in the rates of heart disease,” said Deen.

His various experiences have resulted in a special interest in preventing heart disease by encouraging patients and families to lead healthy lifestyles.

“The process of developing adult-onset heart disease begins early in life, before symptoms are present and before it can be diagnosed,” said Deen. “Consequently, educating parents and caregivers in helping children learn heart-healthy habits is key in prevention.” Read full post »

Jude Xenakis, 10 months, with parents Eden and Michael Xenakis and sister Clementine. Jude came to Seattle Children’s for ECMO when he was born with severe meconium aspiration.

This summer, Seattle Children’s hosted a reunion for patients who have one unique experience in common: Extracorporeal Membrane Oxygenation (ECMO) played in key role in saving their lives. Patients, families, doctors and nurses gathered to celebrate the 25th anniversary of Seattle Children’s use of ECMO, an advanced life-support therapy that can replace heart and lung function when these organs fail or need to rest. ECMO is used for a range of life-threatening medical conditions and complications, and Seattle Children’s has been named a Center of Excellence by the Extracorporeal Life Support Organization because of its expertise with technologies such as ECMO.

“Seeing all the kids that ECMO helped save means the world to our doctors and nurses,” said Dr. Michael McMullan, Seattle Children’s Director of Mechanical Cardiac Support and Extracorporeal Life Support (ECLS).

Over the past 25 years, Seattle Children’s ECLS program has touched the lives of more than 700 families. Here we share the stories of a few of these patients – from a cheeky baby to a recent law school graduate – who came together to share their experiences and celebrate where they are today. Read full post »

Aaden Adams with his parents, Cheree and Andrew Adams

Aaden Adams remembers waking up in his room in the Cardiac Intensive Care Unit (CICU) at Seattle Children’s Hospital and asking for red Popsicles.

“Everybody wanted me to talk and I wanted a red Popsicle,” said the precocious 6-year-old with a face full of freckles. “So I asked for Popsicles. Do you remember that, Mom?”

“Yes, we remember that well,” answered Aaden’s mom, Cheree Adams. “That was a good day. That was the day we knew that you were on the right path. We knew that you were coming back to us.”

Just two weeks prior, Aaden, who was born with a congenital heart defect, was so near death that his parents were preparing themselves for the reality that he might not make it out of the hospital. It was a situation they had not even considered.

“He came here for a pretty minor procedure,” said Andrew Adams, Aaden’s father. “He was supposed to be in and out of the operating room, but then his body just shut down. His heart wouldn’t restart.”
Dr. Erin Albers, Aaden’s attending cardiologist, said the complication was so unusual that no one on the care team had seen it before. Read full post »

Lee’or, Sadie and Wendy Rutenberg

Lee’or and Wendy Rutenberg knew that their baby daughter, Sadie, was going to be born with heart problems. Ultrasounds showed that the walls between her heart’s atria and ventricles were not forming correctly. But they didn’t think it would be a problem for Sadie right away.

“Most children with conditions like Sadie’s don’t need surgery until they are 2 or 3 years old. We thought we’d have two or three years of relatively normal life before we’d have to do all of this,” Lee’or Rutenberg said as he gestured toward his daughter’s bed at Seattle Children’s Hospital.

Unfortunately for the Rutenbergs, Sadie’s heart problems were more complex than expected. The only option for her was a type of pediatric heart valve that is currently in clinical trial. Sadie would become the first child in the U.S. to receive the valve as part of the HALO U.S. IDE Trial, which is testing the safety and efficiency of the St. Jude Medical Masters HPTM Series 15mm mechanical heart valve. Read full post »

Jacob Smith, 16, from Mukilteo, Wash.

Most 16-year-olds wish for a car for their birthday, but not Jacob Smith from Mukilteo, Wash. Jacob‘s wish was for a heart. Fortunately, he didn’t have to wait long for his wish to come true. He received a call from his doctors on Saturday, June 6, 2015. They had a match! He would receive a heart before he turned 16.

“I couldn’t have ever imagined that this would be our story, but here we are,” said Angela Smith, Jacob’s mom. “It was on a Thursday when Jacob got sick, a Thursday when he had open heart surgery, a Thursday when he was put on the transplant list, and now on Thursday, June 18, he’ll celebrate his birthday with a new heart.” Read full post »