Patient Stories

All Articles in the Category ‘Patient Stories’

When a Child Dies, Program Helps Grieving Siblings

Jenna and Braden Westerholm play together. Braden lost his sister to rhabdomyosarcoma in 2009.

In February 2006, Chris and Michele Westerholm’s 2 1/2-year-old daughter, Jenna, was diagnosed with rhabdomyosarcoma – a cancer made up of cells that normally develop into skeletal muscles. At the time, Michele was 11-weeks pregnant with her son Braden.

“It was frightening to imagine what life would be like, having a child with cancer and a newborn,” Michele said. “I didn’t have the time or the energy to plan for adding a new baby to our family.” Read full post »

Doctors Double the Length of Anna’s Arms, Giving Her Independence

Lisa went into labor expecting her daughter wouldn’t survive.

Lisa Booth was 40 weeks and 6 days into what had been a completely normal pregnancy when she received unexpected news during an ultrasound.

“Everything was fine at 9 a.m. At noon, I was told my daughter would be a dwarf. By 4 p.m., I was told she wasn’t going to survive,” said Booth. “I went home in a completely shell-shocked state.”

Hours later, Booth went into labor expecting the worst.

“Going into labor I was thinking she wouldn’t survive,” she said. Read full post »

Agatha Comes One Step Closer to Her Dream Come True

Agatha and her brother order ice cream at their favorite ice cream shop, Scoop Du Jour.

Nearly half a mile away from 10-year-old Agatha Holloway’s home is a quaint family owned ice cream shop called Scoop Du Jour. It’s her favorite ice cream shop, and she’s always dreamed of being able to walk there. But until recently, that journey was physically too far for her to walk.

Agatha’s declining mobility made walking long distances impossible, but today, thanks to Seattle Children’s Orthopedics and Rehabilitation Medicine teams, Agatha’s dream has come true. Read full post »

Teen Proves Kawasaki Disease is Not One Size Fits All

Audrey is a teen with Kawasaki disease. Here, she is pictured with her cello before the condition caused a large aneurysm to form in her heart. 

Whether she’s performing in her school’s jazz band, teaching cello, painting or working as a YMCA counselor, Audrey Wright, 16, seems to do it all. She especially doesn’t let an aneurysm in her heart that developed as a result of Kawasaki disease get in the way of being a busy teenager and her dreams of majoring in studio art.

Audrey was diagnosed with Kawasaki disease, a serious illness that causes inflammation of blood vessels throughout the body, after coming down with what she and everyone else thought was a really bad viral infection. Despite visiting her pediatrician four times in six days, it wasn’t until her blood pressure dipped dangerously low that she was transported to Seattle Children’s. There, doctors in the Pediatric Intensive Care Unit began to unravel the mystery of what was causing her illness.

“Once they got the report back, all of the pediatricians she had seen before coming to the hospital couldn’t believe it was Kawasaki disease,” Karen Wright, Audrey’s mom, said. “They were pretty shocked because she’s not the typical patient.” Read full post »

To Save a Budding Heart, Innovative Surgery Performed for the First Time in the Pacific Northwest

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.

Read full post »

3D-Printed Heart Transforms Family’s Understanding of Complex Heart Disease

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 »

Montana Twins’ Hearts Beat in Harmony Following Unexpected Surgery Days After Birth

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 »

A New Approach to Caring for Kids with Tuberous Sclerosis Complex

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 Pens a Letter of Gratitude to the Doctor Who Cared for Him and His Dad

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 »

Ben’s Customized Prosthesis is Out of This World

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 »