On the Pulse

Two Brothers, Four Transplants, One Strong Family

Logan (left) and Connor Brown at Turnagain Arm in Alaska. The brothers have both received kidney and liver transplants at Seattle Children’s.

“I hate to tell you this, but your son needs a kidney transplant.”

Those words left Rob and Patty Brown dumbstruck.

It was October 2008. That day their 6-year-old son, Connor, had complained that his feet were cramping during hockey practice. Later that evening, his hands and feet completely locked up — a condition called tetany.

“We raced him to the emergency room thinking it was just something silly,” Rob remembers.

It wasn’t something silly. Connor was diagnosed with nephronophthisis, a rare genetic disorder that leads to kidney failure.

Little did the Browns know this was just the beginning of a long and frightening journey, not only for Connor but for their younger son, Logan, as well — a journey that would lead to four transplants and would test their strength as a family.

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Out of Heartache, Hope Surfaces for Colton’s Metabolic Disorder

Colton Iverson holds a photo of his older sister, Cody. Photo courtesy Copper Ridge Photography.

Before his first breath, Colton Iverson had already received the gift of a lifetime. Just days old, he became the youngest patient to go on a drug recently approved by the U.S. Food and Drug Administration (FDA) for the treatment of a life-threatening genetic condition called very long-chain acyl-CoA dehydrogenase, or VLCAD, deficiency.

For his parents, the hope it inspired did not come without heartache.

“Colton wouldn’t be here today without our first born, his older sister Cody,” said his mom, Lisa Iverson.

A few days after coming home as excited new parents of a healthy baby girl with an Apgar score of 10, Cody went lifeless in Lisa’s arms one morning. She and her husband, Ty Iverson, rushed Cody to their local hospital in northeastern Washington.

“They did everything they could to save her and they couldn’t,” Lisa said. “For about week, we had no idea what happened to Cody.”

On the day of Cody’s service, the Iversons heard from their family medicine doctor, Dr. Geoffry Jones.

“As we were driving home, I remember the exact spot on the road when we got the call from Dr. Jones,” Lisa said. “He said her newborn blood test showed she had a genetic condition called VLCAD. He recommended we get in touch with a specialist at Seattle Children’s to learn more.” Read full post »


Winter Blues or Something More? Helping Kids and Teens Cope

Winter can be a particularly blue time of the year for people. Darker, colder days and the post-holiday letdown often cause a decline in mood and motivation.

It’s normal for all kids to experience emotional ups and downs, including the winter blues. With the COVID-related changes in school and social activities this winter, youth may be especially vulnerable to increased moodiness and irritability. But at least one in five kids will have a diagnosable mental health problem that needs treatment.

Parents can support their child or teen as they cope with seasonal sadness, while being alert to the signs and symptoms of mental health problems that require expert care. Read full post »


Child Life Specialists Help Patients and Families Cope During Uncertain Times

No matter the circumstances outside the walls of the hospital, Seattle Children’s is steadfast in helping every child live the most fulfilling life possible. Although COVID-19 has halted many things in life, health is not one. Compassion and expert care are two infallible aspects that make Seattle Children’s a place families can count on when they need care, and supporting that relentless mission are the incredible health care workers at Seattle Children’s who continue to provide the best, safest care possible for patients and families.

This year, child life specialists at Seattle Children’s have worked tirelessly to try and make the hospital feel like the same inviting and safe place it has always been. They are heroes without capes. Child life specialists help make sure a family’s experience at the hospital is a positive one. As members of the health care team, they work directly with patients and families to help explain a medical diagnosis, create coping plans, teach relaxation techniques, and more.

Walk into the Emergency Department and patients and families will see the bright, welcoming eyes of Riley Coyle. Underneath her mask and face shield, she radiates light. With her warm and inviting personality, she helps patients and families navigate through what can be a traumatic experience. No family hopes to find themselves in the emergency department, but when they do, Coyle is happy to be there with a reassuring hand.

“It’s a huge honor to support our patients and families and be a part of their journey,” Coyle said. “It’s really rewarding, and I try to do anything and everything I can to help them.” Read full post »


Vitamin D Levels During Pregnancy Linked with Child IQ, Study Shows Disparities Among Black Women

Vitamin D is a critical nutrient and has many important functions in the body. A mother’s vitamin D supply is passed to her baby in utero and helps regulate processes including brain development. A study published today in The Journal of Nutrition showed that mothers’ vitamin D levels during pregnancy were associated with their children’s IQ, suggesting that higher vitamin D levels in pregnancy may lead to greater childhood IQ scores. The study also identified significantly lower levels of vitamin D levels among Black pregnant women.

Melissa Melough, the lead author of the study and research scientist in the Center of Child Health, Behavior, and Development at Seattle Children’s Research Institute, says vitamin D deficiency is common among the general population as well as pregnant women, but notes that Black women are at greater risk. Melough says she hopes the study will help health care providers address disparities among women of color and those who are at higher risk for vitamin D deficiency. Read full post »


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.

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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.

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