Patient Care

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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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 »

Colleen 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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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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“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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Zenashe (pictured on left) and her two children pick up food and other supplies at one of the Seattle Children’s Odessa Brown Children’s Clinic pickup locations in August.

When the economic and social impacts of the coronavirus pandemic began taking root in early spring 2020, the team at Seattle Children’s Odessa Brown Children’s Clinic (OBCC) immediately anticipated the devastation and hardship it would bring.

“From the start, we recognized that the families we serve were being disproportionally negatively impacted by the virus itself, and its effects,” said Arlesia Bailey, senior director of community health and development at OBCC.

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The Therapeutics Cell Manufacturing facility at Building Cure translates laboratory discoveries into real-world treatments.

The U.S. Food and Drug Administration on Feb. 5 approved Bristol Myers Squibb’s Breyanzi, a chimeric antigen receptor (CAR) T-cell therapy used to treat adults with certain types of large B-cell lymphoma who have not responded to or who have relapsed after standard treatments.

The approval was supported by research at Seattle Children’s, including the chimeric antigen receptor (CAR) T-cell product, patient product manufacturing for Juno Therapeutics’ TRANSCEND trial, and data from the Pediatric Leukemia Adoptive Therapy (PLAT-02) clinical trial. In the PLAT-02 clinical trial, 93% of patients with relapsed or refractory acute lymphoblastic leukemia achieved initial remission, and about 50% were still in remission one year after therapy. Read full post »

Ezra Anpo (right), here with his sister Aria, participated in a research study investigating a liquid biopsy approach to providing a genetic diagnosis in children with lymphatic malformations.

Doctors at Seattle Children’s are investigating whether a simple liquid biopsy containing a small amount of fluid from a patient may someday provide an easier route to a genetic diagnosis in children with vascular or lymphatic malformations.

The work is a collaborative effort led by Dr. James Bennett, a clinical geneticist and co-director of the molecular diagnostic laboratory at Seattle Children’s and Dr. Jonathan Perkins, an otolaryngologist and director of the Vascular Anomalies Clinic. Liquid biopsy offers an alternative to the more invasive surgical biopsies required – when a genetic, or molecular diagnosis, is needed to help guide a patient’s treatment.

“We can now provide a specific genetic diagnosis for a lot of vascular malformations,” Bennett said. “That’s important for families for a variety of reasons with one being it’s just extremely healing and powerful to know the reason why your child has these differences.” Read full post »

Giorgia Graham, 11, is among the 20 to 30% of children with epilepsy whose seizures do not respond to medication. Surgery is an option if doctors can pinpoint the source of the seizures and remove the abnormal tissue without affecting the child’s ability to process information, see, speak or move.

When 11-year-old, Giorgia Graham, told her parents her cheek was going sporadically numb, they thought it was because she banged her face playing tag.

But when the numbness kept coming back, her parents realized it was something more serious. They discovered Giorgia was having seizures when she experienced a grand mal seizure sleeping one night with her mom while her dad was traveling out of the country. Though the seizures remained mostly isolated to Giorgia’s face, some, like this one, took over her entire body and caused her to lose consciousness. At worst, she was having more than 60 seizures a day.

“When medications didn’t stop the seizures, Giorgia’s mom, Christina, and I knew brain surgery was our only hope,” said Nick Graham, Giorgia’s dad. “That’s when we came to Seattle Children’s for a second opinion to see if surgery was possible.” Read full post »

Colton Iverson holds a photo of his older sister, Cody. Photo courtesy Copper Ridge Photography.

Before his first breath, Colton Iverson had already received the gift of a lifetime. Just days old, he became the youngest patient to go on a drug recently approved by the U.S. Food and Drug Administration (FDA) for the treatment of a life-threatening genetic condition called very long-chain acyl-CoA dehydrogenase, or VLCAD, deficiency.

For his parents, the hope it inspired did not come without heartache.

“Colton wouldn’t be here today without our first born, his older sister Cody,” said his mom, Lisa Iverson.

A few days after coming home as excited new parents of a healthy baby girl with an Apgar score of 10, Cody went lifeless in Lisa’s arms one morning. She and her husband, Ty Iverson, rushed Cody to their local hospital in northeastern Washington.

“They did everything they could to save her and they couldn’t,” Lisa said. “For about week, we had no idea what happened to Cody.”

On the day of Cody’s service, the Iversons heard from their family medicine doctor, Dr. Geoffry Jones.

“As we were driving home, I remember the exact spot on the road when we got the call from Dr. Jones,” Lisa said. “He said her newborn blood test showed she had a genetic condition called VLCAD. He recommended we get in touch with a specialist at Seattle Children’s to learn more.” Read full post »