On the Pulse

Cultivating a Healthy Environment for Our Children

Dr. Markus Boos and his son plant a tree during an event in March.

In unprecedented times like this, we often reflect on what we as humans can do to better our world. In terms of climate change, there are many ways we can make a difference, whether on a small or large scale, in order to create a sustainable and healthy environment for all.

Seattle Children’s is committed to fulfilling its mission of treating the whole child, and with this comes the responsibility of understanding the facts, sharing our knowledge, and developing ways to combat climate change and the drastic impact it has on our health.

Children are especially vulnerable to the health effects of climate change, and as an organization, we are striving to minimize our carbon footprint and improve the health and well-being of our patients, families, workforce and our local and global community.

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Returning to Sports Safely During COVID-19

As our state and counties progress through the Safe Start phases, our local athletic teams and activity centers will look to return as well. We are all anxious to get back to our regular activities, but how can we ensure that we are doing this the safest way possible?

Our athletic training team is here to help. We have compiled recommendations from the Centers for Disease Control and Prevention (CDC), Washington State Department of Health, Washington Interscholastic Activities Association (WIAA), National Federation of State High School Associations, and Korey Stringer Institute. Our goal is to provide you with some questions to ask and information to look for so that you can feel prepared and make the most informed choices around re-engaging your child safely into sports. Read full post »


Like Mother, Like Daughter: Sharing a Craniofacial Care Team and Condition

Twins Melody (top) and Lyric Allen were born amidst the COVID-19 pandemic. Melody, like her mother, was born with a condition called craniofacial microsomia and needed care through in-person and telehealth appointments provided by Seattle Children’s Craniofacial team in the immediate days, weeks and months following her diagnosis.

Just weeks after the state of Washington went under shelter-in-place guidelines, Jenalysse Renaud gave birth to two beautiful babies on April 17, 2020. Renaud and Donovan Allen, the twins’ musician father, named them Melody and Lyric.

Melody, a whole two minutes older than her little brother, faces a few challenges. Her left eye is smaller than her right and is being monitored for potential blindness. In addition, she likely has hearing loss or deafness in one ear, all features of hemifacial microsomia. After several tests, she was also diagnosed with malrotation— an abnormality in which the intestine does not form in the correct way in the abdomen—at just a month old. Thankfully, she shouldn’t face any prolonged consequences from that diagnosis after undergoing corrective surgery in May.

Renaud herself was born with hemifacial microsomia, the same condition Melody now faces. Craniofacial microsomia, also known as hemifacial microsomia, is a congenital condition in which the tissues on one side of the face are underdeveloped—as well as some hearing loss. Renaud was also born with a solitary left kidney. Read full post »


From Stunning Diagnosis to Unexpected Hope: MEK Inhibitor Proves Amazing for Grace

Despite a lifetime of medical setbacks, you’ll almost always find 18-year-old Grace Carney smiling.

Grace Carney was 16 years old when she first began falling. Before long, she was falling every day. It got so bad that she had to rely on other people — family members at home and aides at school — to help her walk.

For Grace, this was the latest in a lifetime of medical setbacks, many of which stem from neurofibromatosis type one (NF1), a genetic disorder that causes tumors to grow all over the body, including under the skin and on the nerves.

To improve Grace’s ability to walk, a doctor in Spokane recommended a major orthopedic surgery. But as the Carneys prepared for that surgery, an MRI result flipped everything upside down and brought them to Seattle Children’s, where Grace received an innovative medical treatment that changed her life and could do the same for countless others with NF1. Read full post »


Reason to Celebrate: The Graduating Class of 2020

The patients at Seattle Children’s inspire. Through their tremendous stories, we have the opportunity to learn about what it means to be brave—what it means to persevere. Monumental accomplishments demand to be celebrated.

Over the years, Seattle Children’s has had the honor of sharing the incredible stories of our Patient Ambassadors. Several of those that already shared their personal and trying stories have reached a new milestone: graduation. Though 2020 has been one of the most challenging years in decades, the tremendous accomplishments of our patients are all the reason to celebrate.

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“You Don’t Have to Know Yourself Right Away”: Iris Shares Her Journey of Self Discovery As a Transgender Woman

In honor of LGBTQ+ Pride Month, Seattle Children’s patient Iris shares her story as a self-identified transgender woman and offers advice on how you can support the mental health and well-being of other transgender youth.

In July, Lisa picked up her 17-year-old, who had been identifying as gender non-binary, from summer camp. When her teen got into the car, they had news.

“I want to change my name to Iris and I am going to use feminine pronouns from this point forward.”

Lisa remembers her light-hearted response. “I just said, ‘Okay. But you may have to give me a minute to adjust.’”

For Lisa, this was not a tremendous, earth-shifting announcement. It was just another opportunity to support her daughter’s journey of self-discovery.

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Dr. John McGuire Shares His Son’s Challenges with Mental Health

I have worked at Seattle Children’s for 16 years and have been the Chief of Critical Care Medicine since 2013. My son Peter just turned 17. He recently “celebrated” his birthday at a therapeutic boarding school where he is in residential treatment for anxiety and depression. Although he was in and out of outpatient therapy for several years and was hospitalized at the Seattle Children’s Psychiatry and Behavioral Medicine Unit (PBMU) for severe depression at age 13, I rarely discussed his mental health with my colleagues. Most of the people I worked with regularly were unaware that coping with Peter’s anxiety and depression was part of my daily life. I used to think it was something private to keep to myself. However, I now realize it was my inability to address my own fear that kept me silent. I retreated into my job, and, at work, I could be the confident physician and ICU leader rather than the uncertain, anxious parent who didn’t know how to help his struggling son.

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New Discovery Paves Way for Next-Generation Malaria Vaccine

Drs. Debashree Goswami (front) and Nana Minkah are working with their Kappe Lab colleagues to develop a vaccine for malaria. New research published by Goswami and her teammates paves the way for a novel, next generation vaccine against Plasmodium falciparum, the parasite that causes the deadliest form of malaria in humans.

In an unprecedented first, scientists at Seattle Children’s Research Institute have developed a genetically attenuated parasite (GAP) that arrests late in the liver stage of human malaria. Their findings published in JCI Insight pave the way for a novel, next-generation GAP vaccine against Plasmodium falciparum, the parasite that causes the deadliest form of malaria in humans.

According to Dr. Debashree Goswami, a fellow in the Kappe Lab at the research institute’s Center for Global Infectious Disease Research and lead author of the paper, a vaccine candidate based on their findings has the potential to offer protection to those living in regions where the transmission of malaria is widespread throughout the population. Read full post »


Providing a Safe Environment for Routine Care During the COVID-19 Pandemic

My teenage son, Jonathan, and I recently visited Seattle Children’s in April for an ophthalmology appointment.

As a parent, I was feeling very concerned about going to the hospital during this time, as my son has an ongoing health issue. When the scheduler called to reschedule his appointment, she told us that they were doing this for safety measures. I proceeded to ask her a lot of questions about safety protocols and she took the time to answer all of my questions. She didn’t rush me. I felt better after talking to her.

When we arrived at the entrance, there was a nurse that stopped us outside and asked us some questions. We got our temperature taken and were given the go ahead to go into the building.

Once inside, many people we saw were wearing masks. I immediately felt better about being in the hospital.

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Engineered T Cells for Type 1 Diabetes Move Closer to Clinic

Dr. Jane Buckner of the Benaroya Research Institute at Virginia Mason and Dr. David Rawlings of Seattle Children’s Research Institute are leading gene editing research to develop new therapies for autoimmune conditions like type 1 diabetes.

For much of the last decade, Dr. David Rawlings, director of Seattle Children’s Research Institute’s Center for Immunity and Immunotherapies, has dreamed of developing a therapy for children with type 1 diabetes that doesn’t involve insulin injections but uses a person’s own immune cells to target and treat the disease.

Now, new research and a fresh infusion of funding bring this dream closer to reality, and nearer to opening a first-in-human clinical trial of an experimental therapy at Seattle Children’s in collaboration with research partner Benaroya Research Institute at Virginia Mason (BRI).

“What started as a dream is now within reach,” Rawlings said. “My hope is that our research will lead to a new treatment that turns off the destructive immune response leading to development of type 1 diabetes in children.” Read full post »