A Surgeon’s Legacy Advances Surgical Care in India

A decade ago, the late Seattle Children’s surgeon, Dr. Richard Grady, began traveling to India for a special mission — to provide urgent surgical care to children born with a rare and complex disorder called bladder exstrophy (BE).

Grady’s dedication to helping under-resourced children in India led to the development of a unique international collaborative that aimed to alleviate the global burden of this surgically treatable disease, as documented in a recent article published in JAMA Surgery.

Dr. Paul Merguerian, division chief of urology at Seattle Children’s, who is helping to carry on Grady’s inspirational work, recalls his colleague’s passionate commitment to care for children not only in the Pacific Northwest region, but in a country located more than 7,000 miles across the globe.

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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.

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Discover the Seattle Children’s Stories You Might Have Missed in 2017

With 2018 in full effect, On the Pulse is taking a moment to hit rewind to share five stories that might have floated beneath the flurry of headlines in 2017.

We invite you to take a look back at some of last year’s stories that inspired us and gave us hope.

1. A Mother’s Intuition Leads to Picture-Perfect Treatment of Eye Cancer

Courtesy of Amanda De Vos Photography

Amanda De Vos, a professional photographer, was reviewing shots she took of her 15-month-old identical twin daughters, Julia and Jemma, when a photo of Julia caught her attention.

De Vos would learn that the photo she took of Julia would help to identify a rare eye cancer, retinoblastoma, that was stopped in its tracks with an innovative treatment at Seattle Children’s.

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Kids With IBD Cook up a Recipe for Remission Using a Unique Diet

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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Pinpointing Pancreatitis: How Family History Played a Role in Amber’s Painful Illness

It’s holiday time in the Louden household. However, this year is unlike any other. For the first time in 11 years, 17-year-old Amber Louden will be able to join her family at the Thanksgiving table and indulge in some of her favorite dishes pain-free.

“I remember Thanksgiving two years ago; I ate so much food that I ended up in the hospital because of the horrible pain I was in,” said Amber. “Last year, I didn’t even get a chance to sit at the dinner table because I spent the holiday in the hospital where I stayed for 12 days.”

Amber’s decade-long battle with chronic pancreatitis prevented her from partaking in cherished holiday traditions.

It may be surprising that these traditions and the root of Amber’s struggle with pancreatitis share one common factor — and that happens to be family.

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Wyatt’s Creativity Cruises Onto Kasey Kahne’s No. 5 Race Car

The design 9-year-old cancer patient Wyatt Zender created for Kasey Kahne’s No. 5 race car.

In just three days, 9-year-old Wyatt Zender and his family will see his artwork come to life on the Chicagoland Speedway.

Wyatt, a cancer patient at Seattle Children’s, was the lucky winner of a coloring contest presented by Great Clips to design the paint scheme for Kasey Kahne’s No. 5 Great Clips Strong Against Cancer Chevrolet SS, which Kahne will drive at the first playoff race of the NASCAR Cup Series, The Tales of the Turtles 400, on Sept. 17.

“Our family is so excited to see Wyatt’s colorful design speed down the racetrack,” said Wyatt’s mom, Heather Zender. “This has been a great opportunity to give Wyatt the chance to do something fun and share his story as well.”

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Seattle Children’s Longest-Working Therapy Dog Bids ‘Furwell’ For Retirement

In honor of National Dog Day, On the Pulse is recognizing a special four-legged volunteer who has provided comfort to patients at Seattle Children’s every week for more than 11 years.

If Abe had the ability to talk, he would likely share powerful stories about the thousands of kids he has met throughout his 11-year career as a registered therapy dog.

The road to becoming a therapy dog isn’t easy for most loyal companions, but for Abe, it was his calling.

“I always said he was born to be a therapy dog,” said Judith Bonifaci, Abe’s owner and trusty handler. “From the moment I met him, I could tell he was an old soul who had a special purpose in life.”

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Boy Imprisoned by Intestinal Disease Finds Life-Changing Treatment

Brennan Henderson was born 3 months premature with a host of debilitating health issues, including necrotizing enterocolitis (NEC), a condition that affects the intestines.

It’s common for parents of young children to worry about the unexpected accident that may occur while they’re out in public.  But for the Henderson family, being prepared for the unexpected was something that lasted well beyond the early years of childhood.

Whether it was attending a family gathering or simply dropping by the grocery store, there was always a looming concern around when their youngest son, Brennan, may have his next vomiting or bowel incontinence episode.

“There were times when we would go to a restaurant and have to cover him with a blanket,” said Brennan’s mother, Gloria Henderson. “We did it to muffle the sound of him vomiting into a bag. It felt awful having to do it, but it was the only option we had.”

Brennan was born 3 months premature with a host of debilitating health conditions, including necrotizing enterocolitis (NEC).

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Born Into Drug Addiction, Boy Overcomes Hepatitis C and Finds a Forever Home

Talon, 11, contracted hepatitis C from his birth mother’s drug addiction. After enrolling into a clinical drug trial offered at Seattle Children’s, Talon is now free of both the virus and social stigma.

Behind his dimpled smile and comical laugh, Talon Hendrickson-Zimmerman has the kind of carefree spirit that could be hard for anyone to forget.

However, life wasn’t always as easy for the 11-year-old. Talon began his life as one of the forgotten children affected by the “opioid epidemic”, leaving him without a mother or home to call his own.

When he was born, Talon suffered the consequences from his birth mother’s drug addiction, which included the contraction of hepatitis C, a contagious virus affecting 23,000 to 46,000 children in the United States that can cause fatal liver damage if untreated.

“Hepatitis C is a virus that causes inflammation of the liver,” said Dr. Karen Murray, division chief of pediatric gastroenterology and hepatology at Seattle Children’s, who has treated Talon since he was 2 years old. “It can be acquired when the blood or other bodily fluids of an infected person enter the bloodstream of a non-infected person. In children, the most common way that hepatitis C is acquired is when a mother passes the virus to the baby during delivery.”

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Cancer Survivors Conquer the Runway with Russell Wilson for a Powerful Cause

Russell Wilson walked the runway with three young cancer survivors for a special fashion show benefiting Seattle Children’s Strong Against Cancer.

Last week, the MoPOP in Seattle became a glamorous gateway to fashion and fun that benefitted Seattle Children’s Strong Against Cancer, a national philanthropic initiative with worldwide implications for potentially curing childhood cancers without the harmful affects of chemotherapy or radiation.

In partnership with Alaska Airlines, renowned fashion designer and Seattle Children’s supporter Luly Yang presented a fashion show to unveil her new collection, while generously sharing the runway spotlight with honored guests representing the important cause.

The show was kicked off by three pint-sized models – 4-year-old Greta Oberhofer, 5-year-old Lucy Watters and 7-year-old Mason Nettleton – each a courageous cancer fighter.

Alaska Airlines paired three of their pilots and captains with each of the kids as they individually strutted down the runway in their custom-made ensembles designed by Yang.

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