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.
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 »
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.’
“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 »
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.
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.”
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.
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 »
Seattle Children’s provides healthcare for the special needs of children regardless of race, color, creed, national origin, religion, sex (gender), sexual orientation or disability. Financial assistance for medically necessary services is based on family income and hospital resources and is provided to children under age 21 whose primary residence is in Washington, Alaska, Montana or Idaho.