Research

All Articles in the Category ‘Research’

Milton Wright Finds His Way Back ‘Home’

Milton Wright III has returned to work at the hospital that saved his life.

Milton Wright III has only worked at Seattle Children’s for a couple months, but the hospital has been his second home for much of his life.

Wright’s childhood unfolded within Seattle Children’s walls — making friends, experiencing loss and facing death more times than he can count.

Today, Wright is back at Seattle Children’s — not as a patient, but as an employee and a symbol of hope.

“I want to do something that’s worthy of my life being saved,” Wright said.

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Fighting for Their Lives: Seattle Children’s Immunotherapy Journey

At Seattle Children’s, many children and young adults with cancer are finding hope in T-cell immunotherapy – an experimental treatment that boosts a patient’s immune system and uses it to fight a disease.

Seattle Children’s researchers are leading clinical trials in which a patient’s T cells are reprogrammed to express a chimeric antigen receptor (CAR) on the surface of the cell. The CAR is like a puzzle piece that’s designed to attach perfectly to a specific antigen or marker on the surface of the cancer cell. When they attach, the CAR T cells attack the cancer cells as if they were fighting an infection.

In just five years, Seattle Children’s cancer immunotherapy program has grown tremendously to include trials that target leukemia, brain and spinal cord tumors and solid tumors. Curious how these clinical trials work? Read on to learn more about the immunotherapy clinical trial process at Seattle Children’s.

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Harper Beare is ‘Doing Something Amazing’

Harper was diagnosed with acute lymphoblastic leukemia when she was just 10 months old.

When asked about the birth of her daughter Harper, Sydney Beare lights up.

“Harper was 8 pounds, 1 ounce, 21.5 inches and the most beautiful baby I’ve ever seen!” she said.

By all accounts, Harper was an exceptionally happy, and seemingly healthy, baby. She began sleeping though the night when she was just a few days old and almost never fussed, even when teething. Beare said her daughter was “totally content.”

But in July 2017, when Harper was 9 months old, she became seriously ill.

Harper first developed an ear infection, a staph infection and had an infected cut on her finger. During the next month she became lethargic and pale.

Beare noticed bruises on her legs, and later on her back and face. Harper began having diarrhea and vomiting. She also slept all the time. Despite all this, Harper’s well-child checkup in August revealed no concerns.

Then, on Aug. 21, Harper woke up with a fever.

“She was just lying there, with dry, cracked lips, screaming,” Beare remembered, choking back tears. “I was worried something was wrong but I pushed that idea aside because I didn’t want to think anything bad could happen to my baby.”

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Driven by His Brother’s Diagnosis, Forrest Pursues a Career in Medicine

Forrest Potter with his younger brother Bryson Potter. Bryson was diagnosed with Leigh Syndrome (LS) as a child, a progressive neurodegenerative disorder.

Forrest Potter grew up at Seattle Children’s watching by the bedside as his little brother faced a debilitating diagnosis, Leigh Syndrome (LS), a progressive neurodegenerative disorder.

Nearly 17 years after his brother’s diagnosis, Potter hopes to once again find himself by the bedside, this time wearing a white coat. When he was younger, there was little he could do for his brother. Today, he’s hopeful he’ll be able to help those in need and that his experiences at Seattle Children’s will help him as he begins a medical journey of his own.

My introduction to medicine was one rooted in fear. Over the course of two weeks, I had developed a routine: Sit in the waiting room collecting my courage, wash my hands, get cleared by the nurse to walk into the pediatric intensive care unit (PICU), get up on the step stool to talk to my unconscious brother for five minutes while looking as little as possible at the giant food processor like machine whirring with his blood. I felt helpless, but there was little more I could do to support my younger brother. Read full post »

Using Gene Therapy to Build an Immune System in Newborns Without One

Gene therapy holds promise of a potentially safer, more effective path to a cure in infants born without the critical infection-fighting cells of the immune system.

Out of every 60,000 births, a baby arrives to face the world without a fully functioning immune system leaving them unequipped to fight even the most common infections. Children with this rare life-threatening genetic condition, known as severe combined immunodeficiency (SCID), have the best chance at a healthy future if they undergo a stem cell transplant before they are 3 ½ months old.

Seattle Children’s recently opened a clinical trial that is seeking a potentially safer, less aggressive and equally effective path to a cure by using a novel gene therapy to fix the faulty gene that causes the most common type of SCID.

On the Pulse met with the trial’s principal investigator, Dr. Aleksandra Petrovic, a pediatric transplant specialist and researcher at Seattle Children’s Research Institute’s Center for Immunity and Immunotherapies, to learn more about the experimental therapy available through this trial. Read full post »

Study Shows a Child’s Neighborhood Continues to Impact Their Weight Status

Can a child’s neighborhood affect his or her weight status, diet, and activity level? According to new research published today in Obesity, the answer is yes.

Dr. Brian Saelens, a principal investigator at Seattle Children’s Research Institute who led the study, said children living in neighborhoods with favorable nutrition and activity environments, meaning the neighborhoods had at least one high quality park and were more walkable and there was access to healthy foods or less access to less healthy foods, continue to have lower rates of obesity when compared to children living in less favorable neighborhoods. Less favorable neighborhoods were defined as having no or lower quality parks and either no supermarket or a higher concentration of fast food restaurants. Read full post »

Facial Surgery Helps Emma’s Confidence Soar

At Seattle Children’s, Emma received the correct diagnosis and treatment for her hemangioma.

Donna West remembers her daughter, Emma, being born with a mark on her face. Part of her right cheek was raised and dark purple, like a bruise. A dermatologist diagnosed the mark as a benign extravascular hemangioma, a term that is no longer used, and said not to be concerned. A hemangioma is a collection of extra blood vessels in the skin.

However, as years passed, the hemangioma grew larger and began to hurt. When Emma, now 11, would hang upside down in the playground, it would throb. If she coughed, the mark would get inflamed and shiny.

“When she would have a coughing spell from her asthma or a cold, the pain was like clockwork,” West said. “We were told it could go away, but that wasn’t happening.”

Until receiving care from Dr. Jonathan Perkins, clinic chief of vascular anomalies at Seattle Children’s, who performed surgery on Emma with the help of a new technique called facial nerve mapping, the family didn’t have an accurate diagnosis for the hemangioma or knowledge of treatment options. 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 »

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?

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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 »