When Chelsie McKinney, her husband, and their two boys welcomed baby Rowen into the world in November 2017, they thought he was “absolutely perfect.”
“He was a big, strong and beautiful boy,” McKinney said. “We counted his fingers and toes like all parents do, and he seemed perfectly healthy. We were so excited to bring him home.”
However, before Rowen was discharged from the hospital, doctors noticed he had a heart murmur. An echocardiogram indicated he had a hole in the wall between the lower two chambers of his heart, which is called a ventricular septal defect (VSD). A VSD is the most common heart birth defect, and about three in every 1,000 babies are born with it.
At just a little more than 1 day old, Rowen was taken by ambulance to Seattle Children’s.
“It was scary, and a lot to digest so suddenly,” McKinney said. “We didn’t know what his future would hold. But even with all of the unknowns, we found comfort in knowing he was going to the best hospital where he would be in good hands.”
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Shanae Ceja, first pediatric patient in the Pacific Northwest region to undergo an innovative heart surgery called the Ozaki procedure, with Dr. Jonathan Chen, who performed the complex surgical technique.
As she watched her daughter being wheeled into the operating room, a striking memory overcame the flood of anxious thoughts going through Marisela Barragan’s mind.
“Just a few months before the heart surgery, my daughter Shanae was telling me how desperately she wanted to try out for her school’s volleyball team,” said Barragan. “Her doctors were advising against doing any type of strenuous sport because it could damage her heart, so I kept telling her ‘no.’”
“Then she turned to me and said, ‘Mom, please allow me to try out. If I’m going to die, I want to have done something in my life that I loved.’ Those words truly broke my heart.”
Barragan knew the only way her daughter could pursue volleyball along with her many athletic passions, like any other healthy 13-year-old, was to take a leap of faith with an innovative surgical technique that has only been performed on a small number of pediatric patients in the world. Called the Ozaki procedure, the complex surgical technique would help repair and put a stop to the disease that was causing ongoing damage to Shanae’s heart.
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Active kids enjoy improved mental wellness and reduce their risk of heart disease. While the days are short and the weather is often cold or dreary, kids still need to be getting physical activity each and every day.
February is American Heart Month and On The Pulse asked Emily Carter, athletic trainer, and Dr. Monique Burton, director of the Sports Medicine Program, to share ideas for indoor activities that put a smile on a child’s face and get their heart pumping. Read full post »
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 »