On the Pulse

Scientist Develops New Way to Test for COVID-19 Antibodies

A newly developed cell-free test can rapidly detect COVID-19 neutralizing antibodies and could aid in vaccine testing and drug discovery efforts.

When Dr. Stephen Smith of Seattle Children’s Research Institute came down with muscle aches, gastrointestinal distress and a sudden loss of smell in late February, he suspected he had COVID-19. The testing criteria had yet to be expanded to include individuals with Smith’s symptoms and so he did what many scientists with his expertise would do: he developed a way to test himself.

The fruits of his curiosity, now published in the The Journal of Infectious Diseases, offer a reliable way to quantify whether an individual has neutralizing antibodies that could prevent the novel coronavirus from infecting cells using a method that is more broadly applicable than those currently available.

Read full post »


Malachi Stohr Is “Absolutely Amazing”

On May 7, 2018, Whitney Stohr slumped to the ground in the corner of her son’s room in Seattle Children’s Pediatric Intensive Care Unit.

Her son Malachi, who was born with a severe form of spina bifida, had undergone a tracheostomy days before. When he woke up after the procedure, his pain was so intense his body went into shock.

That night, Stohr remembers hearing beeps and alarms blaring in their room. Malachi wasn’t getting enough oxygen and his heart rate was dropping. Providers rushed in to perform CPR.

“I just crumbled to the floor,” Stohr remembers. “I was scared he wasn’t going to make it.”

That’s when a provider from the Medically Complex Care team knelt beside Stohr.

“She looked me in the eye and said, ‘It’s okay Whitney. We got him. He’s stable. He’s going to be okay.’ She told me that night that I needed to be strong for Malachi, and I haven’t stopped yet.”

The Stohrs have come a long way since then, and while Stohr has feared for her son’s life countless times, Seattle Children’s workforce members have been like a second family during the most challenging moments. Read full post »


Knock Out Flu with the Vaccine

Both the Washington State Department of Health and Seattle Children’s infectious disease expert, Dr. Matthew Kronman, are spreading the word near and far — this year, it’s more important than ever to get vaccinated against the flu. The flu vaccine can keep you and your family from getting and spreading the flu to others during the COVID-19 pandemic. We may not have a vaccine for COVID-19 yet, but we do have one for flu.

“The flu vaccine is urgent – every year. Getting the flu vaccine is the single best way to avoid flu illness, flu hospitalization, and even death due to flu for children,” Kronman said. “Yet this year we have an additional reason to strongly encourage parents to get the flu vaccine for their children: COVID-19. The course of the pandemic is unpredictable, and we want to remove any other strains on the healthcare system that we can. In this case, getting the flu vaccine does exactly that.” Read full post »


An Open Letter: Let’s Celebrate Our Differences

In recognition of Spina Bifida Awareness Month, Whitney Stohr penned an open letter encouraging inclusion. She asks people to join her in celebrating our unique differences and to see her son for the extraordinary child he is.

Whitney and her husband, Jason, found out their son Malachi would be born with spina bifida when she was 19 weeks pregnant. Whitney said the moment they walked through the doors of the hospital they knew they were in the best place possible to give Malachi the best care possible. Whitney and Jason call Seattle Children’s a second home. The Stohr family moved from Yakima to Lynnwood to be closer to the expert care Malachi needs at a moment’s notice, offering them much-needed peace of mind at a time when there’s so much uncertainty.

In total, their family spent more than 380 days at Seattle Children’s, helping Malachi overcome tremendous hurdles. Today, in the midst of a pandemic, Malachi’s healthcare needs remain complex and require seamless coordination amongst his many providers at Seattle Children’s, the only nationally ranked standalone pediatric hospital in the Pacific Northwest.

Malachi’s incredible, ongoing medical journey is only part of their story. Whitney says she hopes people see the bright future Malachi has ahead of him. Read full post »


Kids and Suicidality: The Behavioral Health Crisis Care Clinic Steps Into the Gap

Xander at Meadowdale Beach in Edmonds with Tuft, the family’s dog. Xander began having thoughts of ending his life at age 9, but thanks in large part to the Behavioral Health Crisis Care Clinic, he’s now on the path to recovery.

Xander was just 9 years old when his life took a nightmarish turn.

It started with debilitating headaches, which got so bad that he needed inpatient treatment. The treatment helped, but as the headaches diminished, Xander’s parents noticed a difference in their son.

“He became depressed,” said Stephanie Simpson, Xander’s mother. “He would curl into a ball, was no longer active and couldn’t make it through the school day.”

As if those changes weren’t troubling enough, Xander told his parents something that terrified them: He was having thoughts of ending his life.

Fortunately, Xander was eventually referred to the Behavioral Health Crisis Care Clinic (BHCCC) at Seattle Children’s, where he received a diagnosis and evidence-based treatment that put him on the path to recovery.

Read full post »


“It’s Been Hard, But There’s Hope”: Family Joins Experts to Shed Light on AFM

Maxford Brown, 16, with his family at Seattle Children’s. Maxford was diagnosed with acute flaccid myelitis, or AFM, in 2017. Pictured from left to right: (front) Maxford and his younger brother, Zachary; (back) Maxford’s dad, Jeff; mom, Tracy; and older sister, Grace.

It’s been over three years since Maxford Brown woke up one morning not feeling well. Neither Maxford nor his family had any idea that it would mark the beginning of a life-changing journey with a rare, but serious neurological condition called acute flaccid myelitis, or AFM.

“I suggested it might help for him to lay down. When I went to wake him up, he had lost all ability to move on his own,” remembered his mom.

In a state of shock, Tracy Brown called their pediatrician to describe what had happened to her son.

“I remember asking our doctor if we should make an appointment,” she said. “That’s when they told me we needed to get Maxford to Seattle Children’s Emergency Department right away.” Read full post »


A Mother’s Ambitious Goal to Raise $1 Million for Cancer Research

Christine O’Connell knows the walls of Seattle Children’s all too well.

In 2017, the O’Connell’s 3-year-old daughter Jane was diagnosed with stage IV Wilms, a pediatric kidney cancer. The cancer had spread to both of her lungs, lymph nodes and a vertebra in her spine. The months of chemotherapy, radiation and surgeries that changed their lives forever are still vivid memories.

“Radiation and chemotherapy was our only hope to save Jane’s life, but it is so damaging to young, developing bodies. She will suffer the effects of treatment for the rest of her life,” O’Connell said.

Then she learned that Seattle Children’s was pioneering a better way.

Read full post »


Tips for Having a Fun and Safe Halloween During a Pandemic

There are not many areas of life COVID-19 hasn’t directly impacted. Like with so many other things in 2020, families have had to try to find silver linings during this difficult time. Major milestones like birthdays and graduations have, for the most part, been cancelled, gone remote or shifted to incorporate social distance and extra precautions.

As fall approaches, many parents may be wondering how COVID-19 will affect beloved traditions like trick-or-treating. According to Dr. Mollie Grow, a pediatrician at Seattle Children’s, families can still have fun, but may need to apply some extra creativity to Halloween this year.

“COVID has taken away a lot, especially for kids,” Grow said. “The things that anchor us, are still having a chance to celebrate things we have looked forward to. Trying to figure out different ways to honor our traditions as a family and community can lessen the pain of all the things we’re missing out on because of COVID.”

Dr. Matthew Kronman, an infectious disease expert at Seattle Children’s, said answering the question of whether Halloween and traditions like trick-or-treating are safe is complicated. Read full post »


Making Sense of Restless Sleep Disorder in Children

Emily Caveness, 9, had always been a very active sleeper. When her lack of restful sleep started disrupting her social and school life, her parents sought the help of sleep medicine experts at Seattle Children’s where they first learned of restless sleep disorder in children.

An international panel of sleep experts is adding a new pediatric sleep disorder they call restless sleep disorder, or RSD, to parents’ and pediatricians’ radars.

Led by Seattle Children’s pediatric sleep specialist, Dr. Lourdes DelRosso, the group shares their consensus on a medical definition of RSD in a new paper published in Sleep Medicine. Known to occur in children 6-18 years old, RSD can lead to attention impairment, mood and behavioral problems and other issues at home and school due to poor sleep quality.

“For many years, those of us in sleep medicine have recognized a pattern of sleep that affected a child’s behavior but didn’t fit the criteria for other known sleep disorders or conditions linked to restless sleep like obstructive apnea or restless legs syndrome,” DelRosso said. “This work provides consensus on a definition and diagnostic criteria for RSD, offering a new tool to help more children suffering from restless sleep.” Read full post »


Six Years Later: Immunotherapy’s Tiniest Trial Participant Is Living With “So Much Joy”

Greta Oberhofer, now 7 years old, was the first patient under age 2 included in Seattle Children’s cancer immunotherapy clinical trials. Her parents once considered hospice care for their 13-month-old daughter. Now, Greta has been in remission for six years.

In the fall of 2013, Maggie and Andy Oberhofer watched their tiny, 8-month old daughter, Greta, fight for her life in the Pediatric Intensive Care Unit (PICU) at Doernbecher Children’s Hospital in Portland, Oregon.

Greta had just been through a bone marrow transplant to treat her highly aggressive leukemia. Shortly after, she took a turn for the worse and spent a perilous month in the PICU.

Greta eventually recovered from the transplant and was able to go home, but the family’s reprieve only lasted three months. In March 2014, Greta’s cancer relapsed. Her chance of survival was now 10% or less.

Her parents couldn’t imagine dragging Greta through another bone marrow transplant, so they began to consider end-of-life care for their 13-month-old daughter.

“It was gut-wrenching, knowing her odds were so low,” Maggie said. “We were preparing ourselves to say goodbye to her.”

That’s when they learned about a new option — a cancer immunotherapy trial at Seattle Children’s. Read full post »