On the Pulse

The Gift of Time

A woman holding a toddler with a lake and a forest in the backgroundColleen and Derek spent the first half of Colleen’s pregnancy like many first-time parents, imagining what their child would be like, musing about things they would do as a family and celebrating a joyful new chapter in their lives.

They never imagined they would have a child with special needs or that doctors would predict their baby may not live past childhood. When that became Colleen and Derek’s reality, Seattle Children’s Uncompensated Care Fund gave them the gift they needed most — time with their daughter.

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Improving Hypospadias Outcomes Through Novel Research

A man wearing a suit and tie smiling.

Dr. Nicolas Fernandez, pediatric urologist at Seattle Children’s

Hypospadias (pronounced hype-oh-spay-dee-us) is a birth defect where the opening of the urethra, the tube that carries urine from the bladder to the outside of the body, is not located at the tip of the penis. Depending on the severity of the condition, it can affect the penile function and one’s self-perception. It is a common condition that can be treated with surgery in some cases; however, a decision to proceed with surgery needs to be carefully thought through and discussed among the provider, parents and patients.

The current standard treatment for hypospadias starts with the provider defining the severity of the condition. The severity is based on the location of the urethral meatus, the external opening of the urethra, and the penile curvature. Based on the severity,  some patients may be offered surgery as a next step. Surgery involves using local tissue from one part of the patient’s body to relocate the urethral opening to the correct position at the tip of the penis. To date, assessment of the tissue is subjective, and therefore, it is hard for surgeons to repeat the process moving forward.

Dr. Nicolas Fernandez, a pediatric urologist at Seattle Children’s and surgeon scientist at the University of Washington, is working on a research project that aims to reduce this subjectivity and explore new approaches to better assess structural and genetic components of the tissue used for surgery. He is doing so by proposing a novel approach to evaluate hypospadias.

By using technology to detect small genetic differences that can lead to big changes in an individual’s physical characteristics and by applying artificial intelligence on patients with hypospadias, providers can improve clustering of individuals with similar characteristics to ensure a more accurate prediction for treatment and surgery for this condition. This ultimately leads to better, more impactful outcomes for the patient and family.

Dr. Fernandez spoke with On the Pulse about his research.

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Seattle Children’s Researchers Discover that Nanobodies Could Pack the Biggest Punch Against COVID-19 Variants and Resurgence

Capralogics

When the worst pandemic of the century struck, a group of nine Seattle Children’s Research Institute’s scientists teamed up with researchers from Rockefeller University to innovate powerful tools for diagnosing and treating a virus that has claimed over 5 million lives.

In a recent study published in E-life, scientists from Seattle Children’s Aitchison, Sather, Myler and Debley labs, in collaboration with Rockefeller University’s Chait, Rout and Bieniasz labs, demonstrate how a unique group of antibodies, known as nanobodies, could become an exceptional resource for superior COVID-19 protective and therapeutic interventions, as well as bring hope for effective treatment of diseases most commonly found in low-resource countries.

Antibodies are produced by our bodies as a protective response to bacteria, viruses and foreign substances in our blood. Nanobodies are fragments of antibodies produced by llamas and other members of the camelid family. Nanobodies are ten times smaller than human antibodies, they are remarkably robust and they are readily “humanized” for use in diagnostic and therapeutic treatments. Nanobodies bind to viral-producing antigens in places not accessible to human antibodies and are considerably more thermo-resistant. Read full post »


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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Limited-Edition Magic: The Gathering Card Launch in Support of Seattle Children’s Autism Center

Since 2015, Renton-based Wizards of the Coast, a family of studios specializing in role playing, trading card and digital games, has partnered with Extra Life, an annual fundraising event where people from the gaming industry come together, to raise money for Seattle Children’s Autism Center.

This year, Wizards of the Coast  hopes to raise more funds than ever with the drop of a limited-edition collection of Magic: The Gathering cards, of which 50% of each purchase goes directly to supporting Seattle Children’s Autism Center.

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