On the Pulse

Dying Baby’s Path to Lifesaving Transplant Sheds Light on Disparities in Pediatric Organ Donation

Picturing her daughter making it to her first birthday was difficult for Rachael Rowe as she watched her baby struggle to survive each passing day waiting for a liver transplant.

Time officially took its toll on Feb. 6, 2018 — four months after 10-month-old Raylee was put on the transplant waiting list.

“I remember it was 3:00 a.m. in the morning when I heard Raylee screaming in pain,” said Rowe. “Never in my life had I heard a baby cry like that before. It was terrifying.”

After spending three hours trying to comfort her normally smiley and happy baby, Rowe took Raylee to the emergency room near their home in Portland, Oregon.

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Emmy’s Journey to Overcome Cancer, From Small Steps to Miraculous Leaps

When Emmy Cole was 2 years old, her mother noticed her struggling to walk. She grabbed her cell phone and tearfully recorded Emmy wince in pain as she took only a few, small steps. She knew something was terribly wrong with her daughter. Immediately after, they came to Seattle Children’s in search of answers. Emmy didn’t walk the rest of the day.

They received heartbreaking news. Dani and James Cole, Emmy’s parents, faced the unimaginable reality of helping their daughter through a devastating diagnosis: cancer.

On April 13, 2015, Emmy was diagnosed with high risk neuroblastoma.

Watch Emmy’s story from the beginning, from small, painful steps, to miraculous leaps. Read full post »


Rebounding Back to Life, Dominic Perseveres Past Pediatric Stroke

Dominic Donati, then 9, eating for the first time six days after he suffered multiple strokes.

Sometimes it is the simplest of moments that can bring a family with a child in the hospital the most hope. For Tony and Laurie Donati, such a moment occurred when a neurologist at Seattle Children’s Neurosciences Center handed their son Dominic Donati a pen and paper and asked him to write a sentence only days after suffering multiple strokes.

Unable to speak at the time, Dominic, then 9, wrote, “Hi. My name is Dom.”

“It makes me cry every time I think about him writing this incredibly simple sentence,” Laurie, his mom, said. “Dominic’s stroke was the most awful thing that has ever happened to our family. I think everyone in the room felt excited because it was the first time we knew that he could still communicate with us.” Read full post »


Baby Gets New Heart Just Before Turning 3 Months Old, Celebrates Milestone Transplant for Seattle Children’s

At only 3 months old, Titus Sickles was brought back to life. Today, his family says they have a second birthday to celebrate: the day his new heart started beating for the first time.

“He’s a completely new baby,” said Rena Sickles, Titus’ mother. “He has a second chance at life now.”

In dire need of a new heart, Titus was listed for transplant at only 2 months old. Thirty days later, while Rena and her husband, Andrew, were leaving the hospital to go to dinner, they got a call.

“The call came and I just knew,” said Rena. “I looked at my husband and we just started crying.” Read full post »


An Interdisciplinary Team Model in Diagnosing Autism Helps Brendan Find His Voice

Brendan Bittinger, 9, was diagnosed with autism spectrum disorder using a team evaluation model developed at the Seattle Children’s Autism Center.

Some say ‘it takes a village to raise a child.’ At Seattle Children’s Autism Center, this concept came to life to a certain degree through the development of a collaborative method for diagnosing autism in children that aimed to improve the diagnostic process and increase efficiency, with the potential of leading to better patient outcomes.

Linda Bittinger’s 9-year-old son Brendan found his ‘village’ at the Autism Center in June 2017 when a team made up of providers from different disciplines came together for a thoughtful diagnostic evaluation that would shape his treatment path to progress.

“When we received his diagnosis, I felt a sense of optimism,” said Bittinger. “I had less worries knowing there were opportunities for treatment. And since then, he’s made tremendous strides.”

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Mother Donates Kidney to Save Her Daughter’s Life, Advocates for Donor Awareness

At 4 months old, Raegen was diagnosed with congenital nephrotic syndrome.

Early on in Raegen Allard’s life, her mother, Francisca Allard, noticed something wasn’t quite right with her beautiful daughter. Raegen would seem upset after she ate and her stomach was enlarged. She also had a bruise around her belly button, which worried Allard further. At 4 months old, Allard took her daughter to the emergency room closest to their home in Snohomish. They told Allard she needed to be taken immediately to Seattle Children’s Emergency Department. When they arrived they received unexpected news: they weren’t going home. Raegan was admitted to Seattle Children’s Neonatal Intensive Care Unit (NICU).

Raegen was diagnosed with congenital nephrotic syndrome, a kidney condition that begins in infancy and typically leads to irreversible kidney failure (end-stage renal disease) by early childhood.

“I didn’t know what to do,” said Allard. “It was like I was watching life unfold in front of me and I had no control. All I could do was hold her hand. It was a whirlwind.” Read full post »


Agatha’s Dream of Walking to Her Local Ice Cream Shop Comes True

On Saturday morning, 10-year-old Agatha Holloway’s dream came true. Photo credit: Katie McCullough Simmons.

On Saturday morning, nearly 50 people gathered outside of 10-year-old Agatha Holloway’s home in the east central Seattle neighborhood of Madison Park to support the little girl with an incredible dream and fierce determination.

Her dream was to walk to her local ice cream shop, a journey that until recently seemed impossible. Read full post »


Surprising Discovery Could Improve Malaria Detection Worldwide

New research could pave the way for a rapid screening test capable of diagnosing submicroscopic malaria infections.

While the global health community has made great strides toward eradicating malaria through prevention and treatment strategies, rapid and inexpensive methods to diagnose submicroscopic malaria in individuals who have no clinical symptoms and undetectable levels of disease-causing parasites in their blood remain an unmet need.

With the unexpected discovery of a panel of peptides from several proteins encoded by the parasite that causes malaria, new research underway at Seattle Children’s Research Institute could pave the way for a rapid screening test capable of diagnosing submicroscopic infections.

Such a diagnostic test could permit the widespread screening of all individuals in high-risk regions – a practice global health experts agree is likely required to eradicate malaria. It could also provide a way to diagnose submicroscopic malaria infections during pregnancy, which bring substantial health risks for the pregnant woman, her fetus, and the newborn child. Read full post »


Jack Finds Strength Through His Disability, Inspires Others

Jack Clark, 12, shows off his dance moves on skates.

Jack Clark, 12, was born to stand out. He excels in sports, lights up a room with his infectious smile, amazes bystanders with dance moves on skates, and walks with a gait unique to him – with a prosthesis covered in flames. Jack was born with a disability, but he’s never let it slow him down. From the wrestling mat, to the roller skating rink, he always finds a way to thrive in the face of adversity.

“Most people see my disability as a disadvantage, but personally I see it as an advantage,” said Jack.

Jack was born with rare conditions affecting both of his legs – proximal femoral focal deficiency (PFFD) in both thigh bones and fibular hemimelia in the left lower leg. Isolated PFFD occurs in about one in 50,000 children and fibular hemimilia occurs in about one in 40,000 children. Read full post »


When Rare Epilepsy Struck Toddler, Diet Paved Road to Recovery

Our son, Sam, goofing around at home days before he developed a life-threatening form of epilepsy known as febrile infection-related epilepsy syndrome.

Parents David and Jennifer Cowan share how the rapid initiation of a special medical diet known as the ketogenic diet helped their son recover by leaps and bounds after he suffered from a rare, life-threatening form of epilepsy known as febrile infection-related epilepsy syndrome (FIRES). For more about how the ketogenic diet is used to treat epilepsy, please see a Q&A with the ketogenic diet team from Seattle Children’s Neurosciences Center.

Over the summer of 2017, our 4-year-old son Sam came down with a high fever that lasted about a week. Seemingly recovered, a day or two later he awoke as normal, snuggled and watched morning cartoons. But shortly after, and completely unexpectedly, Sam began to seize uncontrollably and stopped breathing. Read full post »