On the Pulse

Kai was first seen at Seattle Children’s Craniofacial Center when he was 5 months old.

Samantha Alexander first met Dr. Emily Gallagher, a craniofacial pediatrician in Seattle Children’s Craniofacial Center, when Alexander brought her 5-month-old son, Kai, to the clinic. Kai’s primary care doctor thought plates in his skull had fused together too quickly. He was evaluated for a metopic ridge, creating a point on his forehead.

While she feared he may need surgery, everything turned out fine. Alexander lovingly jokes, “He has a really big head.”

But from that initial clinic appointment, Alexander and Gallagher bonded over an unlikely love: children’s books. After the appointment was over, they chatted about their favorite books for nearly 30 minutes.

Alexander was an elementary school teacher before moving to Seattle with her husband, DJ Alexander. They moved in 2017 when DJ, a professional football player, was traded to the Seattle Seahawks. She had given up her teaching career, but she held fast to her love of books.

During that first appointment, Gallagher brought up a program called Reach Out and Read, which gives books to children 6 months to 6 years old during well-child visits. Gallagher started the program in the Craniofacial Center as a novel program outside of primary care. In the Craniofacial Center, pediatricians encourage families to read aloud together as a way to promote language development, with an additional focus on children with craniofacial differences who may face additional challenges with speech. Although Alexander’s son was too young for the program at the time, she says she instantly knew she wanted to help Gallagher expand the program.

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Emily Talbot, 17, shares her story about her lifelong battle with a rare brain disease and how she has overcome the physical and mental health challenges caused by the condition through writing and performing music.

Although I look like any other 17-year-old, people don’t know that I live in pain 24 hours a day.

Since the age of 7, I have had 14 brain surgeries, 12 back surgeries and 6 stomach surgeries. I can’t begin to count how many spinal taps I’ve had.

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There is a tremendous need for improved access to mental health care and resources for children and teens nationwide.

At Seattle Children’s, its commitment to helping address this need spans not only within the Seattle community, but throughout the region.

According to the U.S. Centers for Disease Control and Prevention, nearly 1 in 5 children have a mental, emotional, or behavioral disorder, such as anxiety or depression, attention-deficit/hyperactivity disorder, disruptive behavior disorder, and Tourette syndrome.

While early intervention is key in managing mental health issues, only about 20% of children with disorders receive care from a specialized mental health care provider.

That’s why Seattle Children’s is continuously working to enhance access to mental health services, promote education and research, and advocate for families affected by mental illness.

The following describes three of the many innovative programs and initiatives that Seattle Children’s offers to help improve mental health care for all children.

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Exposure to ultraviolet (UV) radiation from the sun early in childhood increases the risk of developing skin cancer later in life. Fortunately, childhood is also when many good habits form, like behaviors to increase sun protection. Dr. Robert Sidbury, division chief of Dermatology at Seattle Children’s, sees early childhood as the best time to begin teaching families about sun safety practices that will serve them well throughout life. Read full post »

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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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 »

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 »

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 »

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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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 »