Picturing her daughter making it to her first birthday was difficult for Rachael Rowe as she watched her baby struggle to survive each passing day waiting for a liver transplant.
Time officially took its toll on Feb. 6, 2018 — four months after 10-month-old Raylee was put on the transplant waiting list.
“I remember it was 3:00 a.m. in the morning when I heard Raylee screaming in pain,” said Rowe. “Never in my life had I heard a baby cry like that before. It was terrifying.”
After spending three hours trying to comfort her normally smiley and happy baby, Rowe took Raylee to the emergency room near their home in Portland, Oregon.
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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.
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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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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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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Isabella Wallis with her older brother and two older sisters.
As the youngest in her family, Isabella Wallis is always following in the footsteps of her older siblings. While it has its perks in helping her learn the ropes, getting to be the first in her family at anything is few and far between.
That was until the 9-year-old from Olympia, Washington, became the first patient to enroll in a first-of-its-kind clinical trial at Seattle Children’s.
“It’s exciting to be able to help other people and give them more information about why they are sick,” said Isabella, who enrolled in the Precision Diagnostics in Inflammatory Bowel Disease, Cellular Therapy and Transplantation (PREDICT) trial after experiencing persistent inflammatory bowel disease (IBD) symptoms for more than six months.
When she didn’t feel well, Isabella, who had always been healthy and loved playing outside, would retreat to her bedroom, finding some comfort in watching reruns of her favorite show, The Simpsons, while lying down. But her upset stomach never went away.
Unclear what was causing Isabella’s illness or what treatment options may exist, her parents turned to Seattle Children’s at the advice of their pediatrician. Read full post »
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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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 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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There are a lot of ways to describe it: soft, hard, brown, green, runny and stinky. It’s a messy topic often discussed behind closed doors, but today, we’re breaking down what you need to know about poop – from its color, consistency and frequency, to what to do when a child is backed up.
According to Dr. Mollie Grow, a pediatrician at Seattle Children’s and the University of Washington, it can be challenging for some families to be open about the body’s natural process of elimination. In other words, it can be hard to talk about poop. There’s often embarrassment talking about the subject when there shouldn’t be.
“As pediatricians, we get really comfortable talking about poop,” said Grow. “We try to normalize the conversation with patients and families.” Read full post »
Today, Kyla Greenstein is an active 13-year-old girl who loves to skiing, among other sports.
From the time Kyla Greenstein was born, something wasn’t quite right with her digestion system. Kyla suffered from chronic diarrhea and bloating, and although she seemed to be an otherwise healthy child, it was concerning for her parents. It wasn’t until a well child check at the age of 5 when the family learned about an unexpected theory for their daughter’s tummy woes.
“On a day-to-day basis she was a happy child,” said Cindy Greenstein, Kyla’s mother. “But occasionally she would bloat and her stomach would be painful to the touch. We knew something was going on, just not what exactly.”
Her doctor recommended she be checked for celiac disease, and so the family was referred to Seattle Children’s where the diagnosis was confirmed.
Celiac disease is an autoimmune disorder. When someone with celiac disease eats gluten, a protein found in wheat and rye, it causes an immune system reaction and stimulates the body to attack the small intestine.
“Celiac is really common, occurring in about 1 in 100 people,” said Dr. Dale Lee, a gastroenterologist at Seattle Children’s and director of Seattle Children’s Celiac Disease Program. “It’s tricky because the presentation of celiac can be different for everyone. The symptoms of celiac can be quite variable, and so many people go undiagnosed.” Read full post »
Lynch posed for a photo with Ciara after getting a makeover. Photo credit: Corky Trewin
Today, patients at Seattle Children’s were pampered thanks to Ciara, who along with her glam squad, surprised children at the hospital with complimentary makeovers.
“Every time I visit Seattle Children’s, I see how strong these children are who are going through such difficult battles,” said Ciara. “I wanted to help make them feel as strong and beautiful as they are to me, and to let them know I’m thinking about them. I often hear that I inspire these kids, but they’re really the ones that inspire me. They are the real superheroes of today.”
Ciara, who often visits Seattle Children’s with her husband, Seahawk’s quarterback Russell Wilson, wanted to organize an event to help make kids at the hospital feel beautiful – both inside and out. And so, for the day, Seattle Children’s was transformed into a beauty salon for “Ciara’s Makeover Monday by Revlon.” Read full post »