On the Pulse

Dr. Doug Diekema, director of education in Seattle Children’s Treuman Katz Center for Pediatric Bioethics.

Providers often must negotiate with patients and families, but how should disagreements be addressed when the discrepancy is rooted in the patient’s culture or beliefs?

The Journal of the American Medical Association published an example of such a dilemma in 2008.

“Ms. R” was a 19-year-old woman who lived in the United States for several years while her parents lived abroad. She underwent an elective cranial surgery related to complications of a genetic syndrome.

The neurosurgical procedure was successful, and Ms. R seemed to be doing well until 10 days later when she complained of an acute, severe headache and quickly became unresponsive.

Ms. R had suffered an intracranial hemorrhage. Following repeated apnea tests, she was declared brain dead.

Because Ms. R’s parents had not been able to say goodbye, she was kept on a ventilator, pending their arrival.

Her father, who held Ms. R’s durable power of attorney for healthcare, arrived within 24 hours of the declaration of death. He requested the ventilator be continued and asked the provider to administer a traditional Chinese medicinal substance to Ms. R.

The father explained the substance is often used in his native country for a range of conditions, including coma. He asked the treating team to combine “the best of Western and Eastern medicine” to benefit his daughter.

Providers were unsure how to proceed. Should they comply with the family’s request, even though they felt certain it would not benefit the patient’s physical condition?

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Through Seattle Children’s Celiac Disease Program, twin sisters Claire and Emma learned how to adopt a new gluten-free diet in to their active, athletic lifestyle.

Claire and Emma Brennan are 13-year-olds who are always on-the-run.

Whether it’s sprinting across the basketball court or flying to their next volleyball tournament halfway across the country, these twin sisters stop at nothing to achieve athletic excellence.

“Claire and Emma have sports practice almost every day of the week,” said their mother, Cathy Brennan. “We’re always on-the-go, so I have to make sure they have easy access to snacks they can eat to keep energized.”

The active teens burn calories at a rapid pace given their hours of intensive sports practice, and so a balanced diet is key to performing at their best.

However, food prep takes some careful planning in the Brennan household as both girls are on a strict gluten-free diet to manage celiac disease, an autoimmune disorder that they were diagnosed with in September 2017.

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Hannah Mae Campbell, 6, received a lifesaving heart transplant at 4 months old. She recently donated her birthday presents to Seattle Children’s.

Last month, 6-year-old Hannah Mae Campbell wanted to invite her entire kindergarten class to her birthday party. However, Hannah decided that she couldn’t possibly keep all of the gifts herself; rather she told her mother that she wanted to give them to kids at Seattle Children’s.

She said she wanted to give kids something to play with that would help them “have fun” and “feel happy,” since being at the hospital can sometimes be sad. Surpassing her original goal of donating 20 gifts, Hannah and her family delivered 139 toys and books to the hospital. The activities included Lego sets, Play-Doh, My Little Pony, Hot Wheels, puzzles, coloring books, dolls, superheroes and stuffed animals.

“Everyone says she’s such an old soul who is always wanting to help others,” said Jennifer Campbell, Hannah’s mother. “A lot of it may have to do with growing up a little quicker in a hospital. Hannah has experienced things like blood transfusions and surgery that a lot of kids have never had to go through.”

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Representing about 70% of cleft lip and palate cases worldwide, non-syndromic cleft lip and palate typically occurs in isolation without other physical abnormalities.

A study conducted by an international research team, which included investigators from Seattle Children’s Research Institute, implicates variants in four genes as a primary cause of non-syndromic cleft lip and palate in humans. The genes, associated for the first time with cleft lip and palate, encode proteins that work together in a network, providing important insight into the biological basis of one of the most common physical malformations. Read full post »

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 »