On the Pulse

Faye Prekeges’s senior photo, taken one year before her cancer diagnosis. Faye was the first patient at Seattle Children’s to have her ovary removed and frozen to try to preserve her fertility while undergoing treatment for high-risk leukemia.

At 19, Faye Prekeges was not planning for parenthood. She was a freshman at Northeastern University in Boston, Massachusetts. She spent her days thinking about majoring in French and dreaming of working with the United Nations Refugee Agency, not about whether she wanted to be a mother one day.

But an unexpected diagnosis changed all that.

Six weeks into her second semester, Faye began having high fevers and visited the university’s health clinic. Providers suggested she had the flu and would feel better in about a week, but her symptoms quickly grew worse. A few days later, she woke up with a fever of 104 degrees.

Faye thought to herself, “I need to see a doctor now.” She took an Uber to Boston Medical Center’s Emergency Department and tested positive for mononucleosis. They kept her overnight because her white blood cell count was abnormally low.

“Luckily, the woman looking at my slides noticed what she thought were blast cells (primitive, undifferentiated blood cells, often found in the blood of people with acute leukemia) and sent them to the pathologist, who confirmed they were,” Faye said.

She was transferred to Boston Children’s Hospital, where she was diagnosed with high-risk B-cell acute lymphoblastic leukemia.

“I believe everything happens for a reason,” Faye said. “I feel like, this happened to me and my family because we are strong enough to get through it.” Read full post »

Giorgia Graham, 11, is among the 20 to 30% of children with epilepsy whose seizures do not respond to medication. Surgery is an option if doctors can pinpoint the source of the seizures and remove the abnormal tissue without affecting the child’s ability to process information, see, speak or move.

When 11-year-old, Giorgia Graham, told her parents her cheek was going sporadically numb, they thought it was because she banged her face playing tag.

But when the numbness kept coming back, her parents realized it was something more serious. They discovered Giorgia was having seizures when she experienced a grand mal seizure sleeping one night with her mom while her dad was traveling out of the country. Though the seizures remained mostly isolated to Giorgia’s face, some, like this one, took over her entire body and caused her to lose consciousness. At worst, she was having more than 60 seizures a day.

“When medications didn’t stop the seizures, Giorgia’s mom, Christina, and I knew brain surgery was our only hope,” said Nick Graham, Giorgia’s dad. “That’s when we came to Seattle Children’s for a second opinion to see if surgery was possible.” Read full post »

Tuesdays are 2-year-old Malachi Stohr’s favorite days. Every Tuesday, rain or shine, Whitney Stohr and Malachi bundle up and wave to the garbage men as they empty the garbage bins at the end of the driveway. Malachi and Whitney then take a walk around the neighborhood, following the big green truck along its route. Malachi loves garbage day, and so when Seattle Children’s found out, they got in touch with Waste Management to plan a special surprise.

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“So much of Malachi’s life is scheduled around his medical needs,” Stohr said. “He spends many days in the hospital, in clinics, in therapy. We’re eternally grateful to have that level of care available to us. We are thankful to have such ready access to the services at Seattle Children’s and in our local community. But, at the end of the day, Malachi is just a typical toddler. He loves big trucks and watching the trash bins go up and down, up and down.” Read full post »

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.

Read full post »

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 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 »

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 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 »

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 »

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 »