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 »
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 “He would curl into a ball, was no longer active and couldn’t make it through the school day.”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.
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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 »