General

All Articles in the Category ‘General’

One Family, Two Children and a 16-Year Quest for Answers

A woman and a man standing next to each other in downtown Seattle.

In March 2020, Maleea (on left) and her brother Malachi started infusion treatments at Seattle Children’s every other week for a rare genetic condition, CLN2.

Sabrina and Reiff Castillote knew something was wrong with their daughter Maleea’s health when she was just 5 days old. Then, their 6-year-old son Malachi’s behavior became concerning.

For over 15 years, Sabrina and Reiff took their children to countless specialists, but they never received a clear diagnosis. “We were told our daughter was considered ‘failure to thrive,’ without any real answers to as to why,” Sabrina said. “Some providers thought Malachi might have autism and ataxia, but not all their symptoms lined up.”

Finally, in 2019, they got an answer.

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An Artist in Equity: Michael Willen Winner of 2021 Odessa Brown Ken Feldman Award

When Michael Willen, art therapist, was growing up in Boulder, Colorado during the 1990s, he heard lots of talk about accepting those who were different from you. Reality, however, often didn’t align with the talk.

“You couldn’t be openly gay or talk about something like being transgender,” he recalls. “I wanted a community to connect with, but I didn’t have that resource until I went to college. I wondered why we couldn’t have more of that.”

These days, Michael is helping build an open, accepting community for students at the Alyssa Burnett Adult Life Center and inpatients at Seattle Children’s. His crowning achievement is Diversity Club, a class at the Alyssa Burnett Center that celebrates diversity and helps students become advocates for equity.

For these reasons, Michael recently received the 2021 Odessa Brown Ken Feldman Award, one of Seattle Children’s highest honors, which recognizes individuals or teams that encourage, promote, and display compassion and advocacy for all people.

The Odessa Brown Children’s Clinic helped establish this award in 2006 to recognize individuals and teams that, beyond their formal job description, model diversity, inclusion, and quality care with dignity. A committee administers the award every year.

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Should Schools Require COVID-19 Vaccinations? An Ethics Expert Weighs In

A child wearing a face covering getting a vaccine.

Isaac was one of the first 5 – 11 age kids to get vaccinated at Seattle children’s

Since the start of the COVID-19 pandemic, people have been asking ethical questions about vaccinating children against the disease: Is it necessary to vaccinate children, who seem to experience the disease differently than adults? Should children in school be required to get the vaccine?

We spoke to Dr. Doug Diekema, an emergency medicine physician at Seattle Children’s and director of education in the Treuman Katz Center for Pediatric Bioethics, to discuss these and other questions about vaccinating kids against COVID-19. Read on to learn more.

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The Mission of a Lifetime: State to Use Dr. Sihoun Hahn’s Newborn Screening Test for Wilson Disease

Kaitlyn and Ryan Wyckoff travel from their hometown of Wasilla, Alaska, to Seattle Children’s so Dr. Sihoun Hahn (center) can monitor and treat them for Wilson disease — a rare genetic disorder.

 

The lifetime goal of Dr. Sihoun Hahn, director of the Wilson Disease Center of Excellence and investigator in Seattle Children’s Research Institute’s Center for Integrative Brain Research, is one step closer to being achieved.

After more than 30 years studying Wilson disease, Hahn’s newborn screening test for this rare genetic condition will be trialed in a pilot study by the Washington State Department of Health by the end of the year. If the study is successful, Hahn’s test could soon be used to diagnose infants across the country with this life-threatening, but easily treated, disease.

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Seattle Children’s Research Division: Celebrating 15 Years of Innovation

For the past 15 years, Seattle Children’s Research Division has been at the forefront of breakthrough innovations. From new drugs to treat cystic fibrosis, to first-in-the-nation use of laser ablation for epilepsy and brain tumors to remove unwanted cells, the research division is advancing our mission to provide hope, care and cures to help every child live the healthiest and most fulfilling life possible.

Here, we take a look at some of the achievements of the past decade-and-a-half.

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Building a Community to Support Seattle Children’s Veteran Colleagues

Cameron, senior IT project manager and communications chair of the Veterans Inclusion Network, celebrates his stepfather’s retirement from the Marine Corps in 2009 after 21 years of service.

Do you know if any of your co-workers are military veterans?

Veterans work in just about every type of role at Seattle Children’s. You may work closely with a veteran and not even know it.

Veterans face special challenges in the workplace. Seattle Children’s Veterans Inclusion was formed in late 2019 to provide resources for veterans, recognize the contributions they make at Seattle Children’s, give them a voice within the organization and provide a place where veterans and their families belong.

 

To learn about the network’s activities and how workforce members can support veterans, we spoke with the leaders of the Veterans Inclusion Network:

  • Jeff, chair: biomedical equipment technician III, Clinical Engineering; served in the Navy for 11 years, including during the first Gulf War
  • Cameron, communications chair: senior Information Technology (IT) project manager, Disaster Recovery/Business Continuity; father, stepfather and other family members served, mostly in the Marine Corps
  • Jesse, mentor liaison: senior director, Real Estate and Property Operations; served in the Navy for six years

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A Comic Book Hero Explains Inflammatory Bowel Disease

Professor Nimbal explaining bacteria to the two children.

Doctors often deal with medical conditions that might be somewhat embarrassing or just difficult for patients to understand. Inflammatory bowel disease, a serious and debilitating condition that, as the name implies, affects the intestines and everything that comes out of them, is one of those ailments.

Medical providers who treat and investigate IBD have to find ways to explain their patients’ situation during medical appointments that may last less than 30 minutes—all while the patient and their caregivers might be overcome with emotion or concern. Too often what the doctors tell them is lost or only partially retained.

Dr. David Suskind, a pediatric gastroenterologist at Seattle Children’s Inflammatory Bowel Disease Center, realized that the caregivers of the children he treats can read pamphlets or educational books about the disease, but he didn’t have anything specific for the kids that explained their condition.

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The flu shot: Questions and answers for parents

Dr. Annika Hofstetter and  Dr. Matthew Kronman spoke with On the Pulse to answer questions parents may have about the flu vaccine this year.

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Celebrating Hispanic Heritage Month at Seattle Children’s Through Art

In celebration of Hispanic Heritage Month, Seattle Children’s Hola Inclusion Network, a group focused on improving connections and services with the Hispanic/Latinx community, invited workforce members, patient families and community members to share their perspectives and stories through art. We have the privilege of sharing the artists’ work.

A collage of two images used in the article.

Two of the entries from the Hispanic Heritage Month art show. See below to view these and other art show pieces and learn about the artists.

Every year from Sept. 15 to Oct. 15, people around the country observe National Hispanic Heritage Month — a celebration of the histories, cultures and incredible contributions of Hispanic and Latinx peoples from Spain, Mexico, the Caribbean, Central America and South America.

This year, Seattle Children’s Hola Inclusion Network invited workforce members, patient families and community members to recognize and celebrate the month in a new way: a first-ever Hispanic Heritage Month art show. The Hola Inclusion Network provides advocacy for and builds community among Seattle Children’s Latinx/Hispanic workforce and allies. The network aims to create better connections within internal and external communities and improve services for Hispanic/Latinx patients and families.

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“So Much to Be Thankful For”: A Year In the Life of the Hatch Family Part Two

Two weeks before their 3-month-old son was scheduled for his second open-heart surgery, Kyle and Samantha Hatch were told their daughter likely had neuroblastoma.

Things are looking up for the Hatch family. William (left) celebrated his first birthday in May — a major milestone for children with his heart condition. While Penny still has a few months of neuroblastoma treatment, her hair is growing back and her nasogastric (NG) tube is out. Still, getting to this point has not been easy.

“We were utterly broken,” Samantha said. “But we had to pull it together for our children.”

After Penny’s tumor was discovered on her MRI, she needed a biopsy to definitively diagnose what providers suspected was cancer.

On August 11, 2020, Penny walked into Seattle Children’s hospital for the procedure. It was the last time Samantha and Kyle saw their daughter walk.

After a tumor sample was collected, Penny was discharged. But at home, Samantha said her daughter started screaming in agony. “She couldn’t stand and was in unbearable pain. I thought, ‘This isn’t normal. We’re going back in.’”

Penny was quickly readmitted to Seattle Children’s for pain management. Watching Kyle hold her in the hospital, Samantha noticed Penny was kicking her left leg while her right leg hung limp.

“It was terrifying,” Samantha said. “She couldn’t move it.”

The biopsy caused Penny’s tumor to swell and press against the nerves in her spinal cord, paralyzing her right leg. To make matters worse, the biopsy confirmed Penny did, in fact, have high-risk neuroblastoma. Read full post »