Patient Care

All Articles in the Category ‘Patient Care’

“We’re Not Just Transplanting Organs, We’re Transplanting Lives”

The Hurtados enrolled their children in the Studies in Pediatric Liver Transplant (SPLIT) database which follows children who receive a liver transplant in the U.S. or Canada. They hope researchers will use this information to help other families like theirs.

Having one child in need of a liver transplant can be tremendously challenging for a parent. Eugenia and Justino Hurtado have four.

All four of the Hurtado children were born with Maple Syrup Urine Disease (MSUD) — a rare genetic metabolic disorder in which the body is unable to break down certain parts of proteins due to an enzyme deficiency. The disease can lead to a buildup of toxic substances that cause organ and brain damage.

Adolescents and adults with MSUD are also at risk for attention deficit disorder, anxiety and depression. Infections, stress, surgeries and injuries can lead to neurological damage at any age.

People with MSUD get most of their nutrients from a prescribed liquid formula. They can eat some low-calorie foods but must be very careful. If they stray from the diet, they can experience muscle spasms, breathing failure, intellectual and developmental disabilities or even coma. Read full post »

Seattle Children’s Athletic Trainers Help High School Athletes Thrive

Picture of Seth Wayne smiling.

Seth Wayne is a Seattle Children’s athletic trainer at Evergreen High School.

Did you know March is National Athletic Training Month? In recognition of Seattle Children’s incredible athletic trainers, we’re highlighting the tremendous role they play in helping athletes thrive on and off the field.

Across the greater Puget Sound region, nearly 50 athletic trainers from Seattle Children’s are embedded in 42 schools from Tacoma to Woodinville. They are with athletes at least five days a week – on the sidelines at games when most injuries occur, as well as in the gym or training facilities during practice. They provide sport-specific training and conditioning programs, as well as injury care for high school athletes. Athletic trainers help care for athletes from a wide array of sports, including football, soccer, lacrosse, gymnastics, wrestling, basketball, baseball, softball, track and field, tennis, golf, swimming, volleyball, cross country and roller derby. From helping tape ankles to suggesting specific exercises to decrease the risk of injury to communicating with orthopedic providers when catastrophic injuries occur, athletic trainers help support young athletes.

“We are the eyes, hands and ears of the care team and a liaison between the providers and patient,” said Seth Wayne, a Seattle Children’s athletic trainer at Evergreen High School.

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New Hip Preservation Program at Seattle Children’s Aims to Help Children and Young Adults With Hip Issues

A man smiling and looking at the camera.

Dr. Todd Blumberg is the program director of Seattle Children’s Child and Young Adult Hip Preservation Program.

Dr. Todd Blumberg, program director of Seattle Children’s Child and Young Adult Hip Preservation Program, has helped build a new program that is truly one-of-a-kind in the Pacific Northwest. The program offers comprehensive and complete care for children, teens and young adults with a wide range of hip conditions.

Blumberg was born and raised in Texas. He graduated from medical school at Baylor College of Medicine. He completed his orthopedic surgery training at the University of Washington and then went on to complete pediatric orthopedic fellowship training at Children’s Hospital of Philadelphia, with additional fellowship training in hip preservation surgery at Boston Children’s Hospital.

We sat down with Blumberg to learn more about the program and his vision for helping children with hip issues live their most fulfilling life possible.

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The Race to Save Sirish’s Brain

A smiling family of two parents and three children posing for the camera with a white background.

Sirish, pictured in the top row on the left with his family, unexpectedly began developing seizures at age 11. Learn how teams at Seattle Children’s helped to protect his brain.

Sirish was a healthy, happy boy with no underlying medical conditions aside from food allergies and eczema, both of which were easily managed at home.

Then one day, he spiked a fever.

Initially, his mother, Jyothi, a physician who previously practiced in India, wasn’t concerned. The fever broke, and Sirish seemed to improve.

About a week later, though, he spiked another fever. This time, medication didn’t help. Then, the unimaginable happened: he had a seizure.

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Some Doctors Wear White Coats, Others Wear Tiaras – Dr. Klane White Is Comfortable in Both

 

A man wearing a doctor's white coat and a tiara smiling and looking at a toddler, who is looking back at the man.

Dr. Klane White is an international leader and advocate for children like Emma with rare skeletal health conditions. As the parent of a child who had a complex medical condition, he knows what it feels like to be on the receiving side of a difficult medical diagnosis and care –– and it’s helped shape him into the incredible provider, researcher and surgeon he is today.

Dr. Klane White leads the Skeletal Health and Dysplasia Program at Seattle Children’s. He is an international expert in the care of children with mucopolysaccharidosis (MPS) and skeletal dysplasia, lecturing around the globe on the orthopedic management of these conditions. In addition to being the only pediatric orthopedic surgeon in the world to serve as principal investigator on phase 3 clinical trials for rare skeletal conditions, he serves on the medical advisory board of Little People of America, the scientific advisory board of the National MPS Society and is an executive founding member of the Skeletal Dysplasia Management Consortium. This story is one example of the compassionate care he and other members of Seattle Children’s Orthopedics and Sports Medicine Program provide to children every day.

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Cutting-Edge Clinical Trials for Alagille Syndrome Help Families Find Relief from Rare Condition

A woman leaning down holding a young girl on a path in a park.

Amanda and her daughter, Amelia, have both been treated at Seattle Children’s for Alagille syndrome.

When Amanda Thorlacius found out she was pregnant with a little girl, she was overjoyed. But she wondered if her daughter would inherit the same genetic condition that robbed her of a normal childhood.

“Give me all the diseases in the world, but don’t give Alagille syndrome to my children,” Amanda said.

Alagille syndrome (ALGS) is a rare, inherited condition in which children may have too few bile ducts in the liver. This causes problems with the way bile moves and makes it hard for the body to remove toxins.

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Using Art and Music Therapy to Promote Physical and Mental Health

Screen shot of a woman with long hair on the left and a painting on the right.

This wintry snow illustration was designed by Helena in a “Dessert and Draw” virtual evening group designed for cancer care teen patients and siblings, 13-years-old and older. The purpose of the Zoom sessions is to present a theme to participants once a month and bring together teen siblings, who may live anywhere in the country.

As part of the Child Life Department, art and music therapy at Seattle Children’s introduces different techniques to promote patients’ physical and mental health, either at patients’ bedside to assist in the art-making process or virtually in smaller groups and one-to-one sessions.

Through a variety of creative materials and techniques, which can include drawing, painting, clay and collage, patients learn about their relationship with art with support from art therapists to help them express themselves, process emotions and connect with loved ones from afar.

Seattle Children’s art therapist, Helena Hillinga Haas, leads many of these individual and virtual group sessions and explains how the process can help develop autonomy, strength and resilience for children and teenagers coping with symptoms, anxiety and traumatic experiences. Read full post »

The Gift of Time

A woman holding a toddler with a lake and a forest in the backgroundColleen and Derek spent the first half of Colleen’s pregnancy like many first-time parents, imagining what their child would be like, musing about things they would do as a family and celebrating a joyful new chapter in their lives.

They never imagined they would have a child with special needs or that doctors would predict their baby may not live past childhood. When that became Colleen and Derek’s reality, Seattle Children’s Uncompensated Care Fund gave them the gift they needed most — time with their daughter.

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How Hunger Helped Dawson Learn to Eat

Photo of a baby smiling with food on his bib.

Today, Dawson is a well-nourished and thriving 9-month-old who eats all his meals and takes all his medications by mouth. If he hadn’t participated on Children’s hunger-based tube weaning process, he might have been dependent on a feeding tube for a much longer time.

When a pregnant Heather Henson learned her baby, Dawson, had hypoplastic left heart syndrome — a rare and serious condition where the left side of the heart is not fully developed — she immediately began researching the disease and the hospitals that treat it.

Heather and her family live in Anchorage, Alaska. The state doesn’t have a pediatric hospital equipped to perform the heart surgeries Dawson would need to survive, so she had to give birth somewhere else.

During her research, Heather found an HLHS Facebook group where other parents shared their experiences with the disease. Stories of successful surgeries and thriving babies gave her hope, but she worried when she saw many children who relied on feeding tubes after their surgeries.

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How a “Kid at Heart” Surgeon Created Seattle Children’s Hospital on Minecraft

“Before COVID-19 restrictions, patients facing surgery were given the opportunity to tour the hospital with their families ahead of time to help ease the nerves and to become comfortable with the process. Since that option became unavailable, Dr.  Henry Ou took it upon himself to create a virtual tour that a kid can walk through on Minecraft! In their world! It is very impressive, and you can tell he has spent a lot of time and effort perfecting it for the kiddos.” — Mariette Broncheau, partner employee — Research

As a self-described “kid at heart,” Dr. Henry Ou said he’s got a good sense for how patients may be feeling, including what they’re interested in and which situations may be scary for them. When the pandemic struck and hospital visitation had to be limited, Ou used his kid-like perspective to accomplish a task very different than his usual surgical case — creating a Minecraft version of the hospital.

Minecraft is a video game that allows players to virtually explore a 3D world with different terrain and environments to accomplish various tasks or missions — a virtual LEGO world of sorts. Over the past 18 months, Dr. Ou has taken thousands of videos and photographs around the hospital and spent hundreds of hours during his personal time designing a Minecraft version of the hospital building.

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