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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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 »
Luke Avansino, now 8, was diagnosed with tuberous sclerosis complex, a rare genetic disorder, as an infant.
Eight years ago, Dr. Jeff Avansino, a surgeon at Seattle Children’s, and his wife, Dr. Amy Criniti, welcomed their third child – a boy named Luke.
For the first few months of Luke’s life, he developed as expected. At about 6 months old, he started having spells of irritability. Avansino and Criniti, both physicians, thought it was likely due to a virus. But Luke’s spells continued.
“My wife has good intuition and knew something was wrong,” Avansino said. “She started looking into his symptoms and thought he might be having infantile spasms, or seizures.”
They took Luke in for tests and Criniti was right – Luke was having seizures. Doctors also found light colored patches on his skin. Further testing confirmed that Luke has a rare genetic disorder called tuberous sclerosis complex (TSC). Read full post »
Asher was born with Robin sequence, which causes a smaller lower jaw and the tongue to be placed further back than normal. These features tend to block the baby’s airway.
The same day Kirstin and Chris King found out they were having a baby boy, they also received some unexpected news.
“We weren’t anticipating anything out of the usual,” said Kirstin. “But the look on the doctor’s face told us something was wrong.”
The ultrasound images revealed their son’s jaw was visibly stunted, which left the family with more questions than answers.
“I remember going home and thinking, ‘What just happened?’” said Kirstin.
Kirstin described the experience as a whirlwind. Read full post »
As the countdown to 2018 begins, we can’t help but look back on all of the amazing stories from Seattle Children’s that inspired readers in 2017. With over 100 stories of hope, care and cures posted on our blog this year, here are the top seven most-read posts of 2017.
Adelynne, with her mom here, was diagnosed with Crohn’s when she was 8 years old. With the help of a special diet, Adelynne has been in clinical remission for more than two years.
A first-of-its-kind-study led by Dr. David Suskind, a gastroenterologist at Seattle Children’s, published in the Journal of Clinical Gastroenterology, found a special diet called the specific carbohydrate diet (SCD) could bring pediatric patients with active Crohn’s and ulcerative colitis into clinical remission.
The findings support the use of SCD – a nutritionally balanced diet that removes grains, dairy, processed foods and sugars, except for honey – as a sole intervention to treat children with inflammatory bowel disease. Read full post »
Avi Shapiro, 17, suffered from Crohn’s disease. He achieved remission through a unique diet called the specific carbohydrate diet (SCD). Now, he has made it his mission to share the benefits of the diet with other kids like him.
Avi Shapiro knows his way around the kitchen. While the average teen might be fishing around their pantry for a bag of potato chips or a box of cookies, Avi is in the kitchen whipping up ingredients for his next delicious concoction. Depending on the day, he might prepare homemade marshmallows, a serving of spaghetti squash pesto or a scrumptious stack of waffles baked to perfection.
The effort that Avi puts into cooking these delectable dishes isn’t purely for pleasure or practice to become the next winner of “Top Chef.” For the 17-year-old, cooking food has become a lifestyle that he has learned to embrace over the last three plus years to remain healthy after achieving remission from Crohn’s disease, a form of inflammatory bowel disease (IBD).
“I learned that being able to cook is a valuable skill to have,” said Avi. “Knowing the types of ingredients to buy which support my well-being and getting to create and eat meals that I actually enjoy feels truly amazing.”
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Ben, 19 months old, shows off his Stormtrooper prosthesis.
With every step 19-month-old Benajmin (Ben) Bronske takes, a legion of Stormtroopers lead his way.
Born into a family of avid Star Wars fans, Ben has become a fan as well. With an infectious smile, while wearing a shirt that says, “I’m a Trooper,” Ben proudly shows off his leg. It was uniquely made just for him – it’s covered in Stormtroopers.
“He’s got a really cool leg and a story to go with it,” said Sarah Bronske, Ben’s mother. Read full post »