On the Pulse

Rock Climbing Brings Families Together, Builds a Community for Children With Limb Differences

Ramon Little, 9, has been rock climbing since he was 5 years old. Seattle Children’s and Outdoors for All partner to give children with limb differences the opportunity to rock climb. Photo by: Scott Filipiak

This weekend, a group of Seattle Children’s patients and families got together outside the walls of the hospital for a unique social – to climb a 30-foot rock climbing wall. For 8 years, Seattle Children’s and Outdoors for All have partnered together to allow children with limb differences the opportunity to rock climb.

Dr. Suzanne Steinman, a physician in the Hand and Upper Extremity Program who helps organize the event, says the social is a way to provide families the opportunity to get together and for kids to see they’re not alone.

“Every child who attends the event has something in common: they all have unique limbs,” said Steinman. “From congenital abnormalities of the hand or foot, to losses from amputation or trauma, kids get to see other kids with arms and legs just like theirs.”

Kenna Chapman, custom events and program manager at Outdoors for All, added, “Events like this make me feel like our work really does enrich the lives of people through recreation.” Read full post »

Wilderness Safety Tips for Families

Dr. Douglas Diekema is passionate about the outdoors and wilderness safety. Here he is photographed with his son Nathan on top of Glacier Peak in the Cascade Range.

Like many Pacific Northwest residents, Dr. Douglas Diekema is an avid hiker, camper, climber and skier. His favorite trails near Seattle include Snow Lake, Mount Dickerman, Lake Serene, Perry Creek and Goat Lake.

But Diekema, an emergency medicine physician and director of education in the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s, not only enjoys the great outdoors – he helps people learn how to stay safe while in the wilderness. His emergency medicine expertise, appreciation for the outdoors and interest in environmental exposure-related conditions intersect in his passion for wilderness safety. Read full post »

Born With a Foot Deformity, Chloe Inspires Others to Stand Beautiful

Chloe Howard, 18, was born with a severe and atypical form of a common foot deformity called clubfootAbout one in every 1,000 babies is born with clubfoot. She underwent two extensive operations on her foot in California before her first birthday. After she and her family moved to Seattle, she underwent a final corrective surgery at Seattle Children’s. Throughout her childhood, she wore corrective casts and braces and spent countless hours in the hospital. 

After being bullied and assaulted by her classmates in high school because of her deformity, Howard bravely decided to stand up and share her story in hopes that her words would inspire others to embrace their imperfections and end bullying. Today, she’s the author of the book “Stand Beautiful,” and is on a mission to redefine beauty. Below is her story and powerful message to others. Read full post »

Baby Makes Miraculous Recovery Days After Spinal Cord Injury

Bear Brother, 1, underwent emergency spine surgery when he was diagnosed with a neurological condition known as a Chiari malformation.

Instead of picking up balloons and cupcakes, Lisa Hannigan and Robert Brother found themselves waiting in the Pediatric Intensive Care Unit (PICU) at Seattle Children’s one day before their son’s first birthday. In less than 36 hours, they had watched as their perfectly healthy son, Bear Brother, lost use of his arms and hands before he was rushed into emergency spine surgery for a neurological condition known as a Chiari malformation.

“It all happened so quickly,” said Hannigan. “After Bear’s daycare called me at work, we got to the Toppenish emergency center around 10 a.m. First thing the next morning he was going into surgery at Seattle Children’s.” Read full post »

Rapid Genetic Testing Helps Find Answers for Sickest Kids

Rapid exome sequencing (rES), a blood test that can quickly detect genetic abnormalities, is helping obtain timely genetic diagnoses for critically ill children at Seattle Children’s.

A newborn boy was admitted to Seattle Children’s Neonatal Intensive Care Unit (NICU) earlier this year with arthrogryposis — a condition where an infant cannot move, their joints becoming frozen in place. When geneticist Dr. Jimmy Bennett met the infant, he was on a respirator and could only move his eyes.

“We didn’t know the cause of the arthrogryposis and could not tell the parents much about their son’s prognosis — whether he would ever come off the ventilator or if he would be intellectually disabled,” Bennett said. “With so little information, it was difficult to decide how to proceed.”

This family had a previous pregnancy that was similarly affected. Bennett believed the cause might be genetic and recommended rapid exome sequencing (rES) — a blood test that can quickly detect genetic abnormalities.

Less than a week later, the test identified a specific condition that led providers to administer an appropriate therapy. Before long, the child was moving.

“Never in a million years would we have tried this therapy without the genetic test results,” Bennett said. “Two weeks later, the patient was off the ventilator and moving all four limbs. It was like a miracle.” Read full post »

Rosy Finds Pride in Her Gender Identity

In honor of LGBT Pride Month, Rosy Delamarter, a 17-year-old patient at Seattle Children’s Gender Clinic, shares her story about discovering her gender identity, the happiness that it brought her, as well as the support she found from friends, family and others in her life during her transition.

For years something inside me felt “off.”

As a little kid I never thought much of the fact that I had been assigned male at birth. Gender roles were equally unimportant in my mind — I played with Hot Wheels and Polly Pocket toys without a second thought. I was a little kid, after all.

It wasn’t until elementary school when I started hanging out with macho, playfully aggressive boys that I became critical of my own gender expression. I didn’t just stop playing with Polly Pocket toys; I was embarrassed that I had ever even touched them. After all, I was a boy, so I was supposed to shoot Nerf guns, punch my friends and gag at everything pink, right?

Read full post »

Can We Respectfully Disagree? Navigating Cultural Differences in Healthcare

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?

Read full post »

Star Athlete Sisters Are ‘Twinning’ When It Comes to Tackling Celiac Disease

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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Lifesaving Experience Inspires Kindergartner to Donate Birthday Gifts

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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New Genetic Causes of Cleft Lip and Palate Revealed

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 »