On the Pulse

In 2009, during Laurina Barker’s 20-week ultrasound, she and her husband Ryan received news that no expecting parents want to hear.

“The technician turned to me and said something looked different and that they would have my doctor call me,” said Barker.

A couple of days later, the Barkers would learn their baby had congenital diaphragmatic hernia (CDH), a rare birth defect where a baby’s diaphragm does not form completely. This leaves a hole between the abdomen and chest allowing their organs, most often their intestines and liver, to slip through the hole and up into the chest.

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When 4-year-old Sho Hansen entered the doors of Seattle Children’s Bellevue Clinic and Surgery Center to get his tonsils removed, he clung on tightly to his mother.

“After his name was called and we sat in the exam room, all he wanted to do was sit in my lap and not acknowledge anyone that came in to talk to us,” said his mother, Lisa Hansen. “Sho is shy and tends to get nervous around people he doesn’t know well.”

One of the staff members in line to help prepare Sho for his surgery was a nurse anesthetist named Anisa Manion.

“My role at the clinic is to administer anesthesia to patients to help them fall asleep before going into surgery,” said Manion. “We’re given a short period of time to get kids as comfortable as possible. The process can be very challenging — many kids are anxious and nervous, so the friendlier we make the environment for them, the easier it is for them.”

Manion has a special trick up her sleeve when it comes to calming kids down during the pre-surgery process.

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It’s not uncommon for kids to complain of abdominal pain around the start of the school year, before a big test, sports game or performance — when their stress and anxiety levels can be at an all-time high.

While this may not be a cause for immediate concern for some parents, others may feel uncertain on how to address their child’s pain, or may not know that there could be more to it than just a few ‘butterflies’ fluttering in their child’s stomach.

Dr. Nicole Sawangpont Pattamanuch, a gastroenterologist at Seattle Children’s, breaks down the symptoms of abdominal pain related to stress and anxiety, recommends coping techniques for kids to alleviate their discomfort, and shares red flags to help families determine if there is something more concerning to their child’s symptoms.

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Brothers Zeke (left) and Isaiah (right) were both born with a rare condition. They received care from Seattle Children’s Reconstructive Pelvic Medicine Program.

Ezekiel, or “Zeke,” 7, and Isaiah, 5, had a life-threatening medical condition at birth. They were both adopted from China with anorectal malformations, which affect about 1 in every 5,000 babies. Babies born with these malformations have no opening at the end of the digestive tract where the anus normally is, requiring complex surgery.

After receiving emergency surgery in China, both received individualized follow-up treatments from Seattle Children’s Reconstructive Pelvic Medicine Program, which is the most comprehensive and experienced program of its kind in the Western U.S. The program brings together the knowledge and skills of experts from General Surgery, Gastroenterology, Motility, Gynecology, Urology, Radiology and Pathology.

“Seattle Children’s has been fantastic, and everyone that we have come across has been great,” said mother Robyn Ross. “Everyone even knew us by name, and they made the whole experience very easy to navigate.” Read full post »

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 »

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 »

Chloe Howard, 18, was born with a severe and atypical form of a common foot deformity called clubfoot. About 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 »

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 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 »

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?

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