On the Pulse

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 »

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.

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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 »

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 »

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 »

When Victoria Reece found out she was pregnant, she and her husband were elated. During their 20-week ultrasound, they found out they were having a boy and left the appointment over the moon with excitement, envisioning a bright future as a family of three with their baby boy in tow.

The next day, they received an unexpected call.

“That’s when the chaos began,” Reece said.

The couple went back for more ultrasounds and their baby was diagnosed with a bilateral cleft lip and palate.

“We were really scared,” Reece said. “I had so much anxiety about it.” Read full post »

In many ways, my role as a father did not change after my 17-month old son, Isaac, was diagnosed with cancer.

Everyone faces adversity in their lives. Did I think ours would be this? Heck no. Did I want it to be this? This is the last thing I wanted. Take me before you take him, I thought.

But the severity of our situation hasn’t changed the lessons I teach my sons: In situations of extreme stress, maintain your demeanor and learn how to process and handle that stress; Be kind to people in the midst of adversity; Treat people the way you want to be treated; Be respectful.

And, never give up.

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Recently appointed to the U.S. Department of Health and Human Services Secretary’s Advisory Committee for Human Research Protections (SACHRP), Dr. Douglas Diekema is a passionate champion for the patients and families who participate in research studies. Here, Diekema is photographed enjoying another passion: hiking and mountaineering.

As a newly appointed member of the U.S. Department of Health and Human Services Secretary’s Advisory Committee for Human Research Protections (SACHRP), Dr. Douglas Diekema has always had a passion for interpreting and applying the regulatory laws for research involving human subjects to support the children and families that participate in research at Seattle Children’s.

Although he just assumed his role on the national committee that guides medical research activity across the U.S. this July, Diekema is no stranger to research oversight: he has served as the chair of Seattle Children’s Institutional Review Board (IRB) for the last two decades. In his time as chair, he’s witnessed Seattle Children’s Research Institute grow from a fledgling initiative into the burgeoning enterprise it is today, overseeing hundreds of research studies across nearly every pediatric specialty.

Here, Diekema reflects on what he’s most looking forward to as a member of SACHRP and why it’s very likely you’ve never heard of an IRB before. Read full post »

Odessa Brown Children’s Clinic (OBCC) is more than a medical home for families. OBCC is often affectionately called a second home by the patients and families it serves, and the clinical staff are referred to as an extension of their family. OBCC is a clinic, but it’s also something much larger: it is hope.

The team at OBCC represents the communities they serve and advocates for the well-being of patients and families both inside the walls of the clinic and beyond.

Today, Boeing has committed to investing $2.5 million to help fund vital programs at OBCC and a new, second OBCC to better serve under-resourced, ethnically diverse communities. Read full post »

Summer is heating up and COVID-19 has left public pools closed and many beaches and lakes without lifeguards. Because of this, families are turning to their own backyards to stay cool by purchasing temporary above-ground pools. These types of pools have specific drowning and safety concerns that families should be aware of.

Dangers of backyard pools

Backyard pools in general pose the greatest threat to children ages 1 through 4, who are unlikely to have had swim lessons and unaware of the dangers of water. Backyard pools tend to be placed close to a house, so it is easy for young children to get out of the house and into the water without anybody noticing.

“Kids have drowned when parents didn’t mean for them to be in the pool,” said Isabell Sakamoto, Suicide and Injury Prevention Program Manager at Seattle Children’s. “With that in mind, having a pool set up in the backyard requires a different level of attention than planning a day at the lake or ocean.”

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