Auren Satake, 17 months, was born with a congenital heart defect known as hypoplastic left heart syndrome.
Rachael Satake holds a 3D-printed replica of her son’s heart condition in her hands during a recent appointment at Seattle Children’s Heart Center. For the first time since learning about the defect midway through pregnancy, she clearly sees how the surgeries he has undergone are helping his heart work despite having only one ventricle.
Her son, Auren, has a serious congenital heart defect called hypoplastic left heart syndrome (HLHS), which means he was born missing the left ventricle of his heart. His right ventricle works double time to supply blood to both his lungs and the rest of his body. Read full post »
Luke Smith was born with only one functional ventricle.
For many, Valentine’s Day is a day to celebrate love. For Jesse Smith, the day holds a different meaning. You can usually find her running a race, or sharing her family’s story to raise awareness for a cause that’s near and dear to her heart – her son’s heart.
Smith was shocked the first time she heard one in 110 babies are born with a heart defect. She didn’t know of anyone who had a child with a heart defect, until she was carrying a child with one. The day Smith and her husband were told they were having a baby boy, they also found out there was something wrong with his heart.
“It was devastating, especially because we truly thought we were simply finding out the baby’s sex that day. It was one of those moments that change you forever,” said Smith. Read full post »
From left right: Twin sisters Freya and Sabina Sturges reunited after Sabina needed an unexpected heart surgery just days after birth.
Leigh Sturges recalls the day she and her husband, Zach Sturges, learned they were having twins. Seven weeks into their first pregnancy, the Bozeman, Montana, family entered a state of happy shock.
“We couldn’t believe it when heard two heart beats on the ultrasound,” she said. “We were realistic about the challenges ahead, deciding it could only make us stronger.”
At the time, they had no idea how soon one of those beating hearts would test their strength. It was only days after delivery when doctors detected a congenital heart condition in one twin, leading the Sturgeses to Seattle Children’s Heart Center for an unexpected heart surgery. Read full post »
18-month-old Casey Lang defied incredible odds after an aggressive infection threatened his life.
Sara Chenault and her husband, Ed Lang, held their 15-month-old baby, Casey Lang, tightly as they sat outside the hospital on a warm sunny day in July. Casey giggled as he watched the wild rabbits hop through the grass. His eyes lit up and he squealed as he reached for the basketball his dad gently rolled toward him. Casey couldn’t seem happier, but his parents were beside themselves – they were saying goodbye to their baby boy.
“His situation was dire and we didn’t want Casey’s last few hours spent in a hospital room,” said Sara as she tearfully recalls that heartbreaking afternoon. “We wanted our last few hours together to be meaningful so we took Casey outside to let him just enjoy being a little boy.”
Casey and his family had already endured a rollercoaster experience throughout an unexpected 5-week hospital stay. They thought they were nearing the end of their time at the hospital and that Casey may finally be out of the woods. However, that morning everything changed. It became clear the worst was yet to come. Read full post »
Josie, with her father, Luis, first came to Seattle Children’s when she was 2 months old.
Josie came to Seattle Children’ Emergency Department when she was 2 months old after acquiring a virus and going into respiratory distress. She was also in the beginning stages of heart failure.
Statistically, she was lucky to have made it that far.
Before birth, Josie was diagnosed with Trisomy 18, a life-threatening condition caused by an extra chromosome that disrupts the typical pattern of development in significant ways. Only about 5 to 10% of children with Trisomy 18 survive beyond their first year of life.
“I didn’t expect her to live that long,” said Josie’s mother, Jenny Castillo. “I hoped we would at least have a few days or weeks with her, and we’ve been thrilled with all the time we’ve had.” Read full post »
Liam Ray, now 4 weeks old, flew from Guam to Seattle hours after being born for lifesaving heart surgery.
In the early morning hours of May 3, Taylor and Scott Ray welcomed baby Liam into the world at a hospital on Andersen Air Force Base in Guam where they were stationed. After Scott noticed Liam looked a little blue and was breathing heavy, doctors took Liam to get a chest X-ray. Expecting a perfectly healthy baby, Taylor and Scott waited; hoping it was nothing serious and they would be able to take him home very soon, as planned. Unfortunately, their plans were about to change.
Taylor will never forget listening in shock as their doctor said, “Your son needs to be transferred to another hospital to have open heart surgery. You have two hours to get ready and decide who can fly with him.”
“It was devastating,” Taylor said. “You hear stories about this happening but you never think it will be you. I thought we’d be going home as a family, and then suddenly I was alone as Scott and Liam were flying across the globe.” Read full post »
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 »
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 »
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 »
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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