On the Pulse

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 »

Ashton Leeds, 8, was treated with larotrectinib at Seattle Children’s for thyroid cancer that had spread to his lungs and lymph nodes.

Dr. Doug Hawkins, division chief of Hematology and Oncology at Seattle Children’s, remembers matching one of the first pediatric cancer patients to an experimental drug that targets a specific set of genetic alterations associated with soft tissue tumors. The drug, larotrectinib, is designed to selectively stop the resulting abnormal tropomyosin receptor kinase (TRK) fusion proteins from promoting cancer cell growth.

“I was so excited to share the test results with the family and present them with the option of enrolling in a clinical trial for this new medication,” Hawkins said. “At the time, I had a pretty good inkling the drug was going to work, but there was very limited evidence of its effectiveness in children. It’s incredibly special that families were willing to take a chance on this drug early on.”

Today, the promising evidence in support of larotrectinib is building. A paper published in The New England Journal of Medicine documents the drug’s effectiveness in treating TRK fusion-positive cancers regardless of patient age or tumor type. The paper includes data from 55 patients, ages 4 months to 76 years and representing 17 different TRK fusion-positive tumor types, treated with larotrectinib. Overall, 75% of patients responded to the treatment and at one year, 71% experienced no disease progression since starting treatment. 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 »

New research suggests inhibiting one group of neurons’ activity may prove to be a highly effective treatment for reducing relapse in recovering addicts.

A new study published by researchers from Seattle Children’s Research Institute reveals how neurons in the brain fuel drug-seeking behavior following compulsive drug use. Their findings, published online in Addiction Biology, suggest inhibiting one group of neurons’ activity may prove to be a highly effective treatment for reducing relapse in recovering addicts.

While the science of addiction is beginning to show how pathological drug use causes the brain’s “go” pathway to become overactive, little is known about what renders some individuals vulnerable to developing addiction and what protects others against it. There are also few effective treatments available to people who develop a drug addiction, or the approximately 90% of individuals who relapse following addiction treatment.

Dr. Susan Ferguson, a principal investigator in the Center for Integrative Brain Research at Seattle Children’s and senior author on the study, describes how her team used an experimental approach called chemogenetic inhibition to probe the relationship between brain activity and behavior in drug addiction. 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 »

John Madden, now 22 years old, has referred to his stay as a teenager in the Seattle Children’s Psychiatric and Behavioral Medicine Unit as the 10 most important days of his life.

When John Madden was 16 years old, the growing stress from his demanding academic schedule became a catalyst for larger issues.

Madden had withdrawn from friends and family. His misuse of prescription medication and use of illicit drugs to cope with the stress further aggravated undiagnosed mental conditions. Bouts of depression and mania sometimes left him sleepless for days with little control over his thoughts and actions.

Madden recognized he needed help, but he was not relieved when he was admitted to the Seattle Children’s Psychiatry and Behavioral Medicine Unit (PBMU).

“I had this Hollywood view of treatment and thought it was going to jump from talking to being restraint-oriented, locked in a room and treated sub-human,” Madden said. “I wanted to avoid that stigma about what goes on in mental health hospitals.”

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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 »