On the Pulse

Clinical Trial Offers Only Treatment Option for Girl with Hepatitis B

Esmee and Willa

Esmee (left) and Willa (right) pose for a photo.

A clinical trial was the only hope for Esmee, a little girl adopted from China. Read below about her story and the innovative research being done at Seattle Children’s Hospital and Research Institute to help those who would otherwise have no treatment option for chronic hepatitis B (HBV).

Renee Jones always wanted a little girl, so when the adoption agency called one day to tell Jones about Esmee and Willa, she was thrilled – two little girls instead of one!

She filed the paperwork for adoption and waited patiently to hear back. Read full post »

Research Finds Preschoolers Need More Opportunities for Active Play

outdoor playThe early childhood years are crucial for learning and development which should always involve a great deal of outdoor physical activity and playtime, but new research shows that’s not always the case. Results from a two-year study published today in Pediatrics show that children in daycares and preschools were presented with only 48 minutes of opportunities for physically active play per day — significantly less than what’s recommended. The National Association for Sport and Physical Education and Let’s Move! Child Care recommend that children should receive at least 120 minutes of active play time daily, including child-led free play and teacher-led play. Read full post »

Promising Research Trials Find New Combination of Drugs Treat Underlying Cause of Most Common Form of Cystic Fibrosis

Dr. Bonnie Ramsey, director of the Center for Clinical and Translational Research at Seattle Children’s Research Institute and professor at the University of Washington

Dr. Bonnie Ramsey, director of the Center for Clinical and Translational Research at Seattle Children’s Research Institute and professor of Pediatrics at the University of Washington

Results from two phase 3 clinical trials published yesterday in the New England Journal of Medicine show that a new combination of medications can successfully treat the underlying cause of cystic fibrosis for patients age 12 and older with two copies of the F508del gene mutation – the most common form of the life-threatening, genetic disease found in over half of the cystic fibrosis (CF) population. Approximately 8,500 people in the U.S., and 22,000 people in North America, Europe and Australia, age 12 and older with cystic fibrosis carry this gene mutation.

The international trial, which studied more than 1,000 cystic fibrosis patients age 12 and older, revealed that a combination of the drugs Kalydeco (ivacaftor) and lumacaftor, an experimental drug that has not yet been approved by the Food and Drug Administration (FDA), successfully treated the defective CF protein and improved lung function. The drugs also helped patients achieve a 40 percent reduction in pulmonary exacerbations, the leading cause of death in cystic fibrosis patients. Read full post »

Family Genetics Study Reveals New Clues to Autism Risk

Dr. Raphael Bernier

Dr. Raphael Bernier

Dr. Raphael Bernier, clinical director of the Autism Center and investigator in the Center for Child Health, Behavior and Development at Seattle Children’s Research Institute has continued his quest to identify genetic mutations that are linked to autism. In a new paper published in Nature Genetics, Bernier and his collaborators at the University of Washington discovered evidence that some children with autism were more likely to have inherited gene mutations most often occurring from mothers to sons.

On the Pulse sat down with Bernier to learn more about these exciting findings. Read full post »

Born with Organs on the Outside, Onora is now a Happy, Healthy Toddler

Onora and Mom Reading

Kristen reads to Onora.

This week, in honor of Mother’s Day, we’re sharing stories about mothers who have found hope through difficult diagnosis and became advocates for other parents and families.

Kristen Moriarty of Missoula, Mont., was 22 weeks into her pregnancy with her daughter, Onora, when a routine visit to their OB-GYN turned into shock and concern. Onora was diagnosed with omphalocele, a rare condition in which the intestines or other organs grow outside of the baby’s body and the umbilical cord forms a sac around them.

Moriarty and her husband had a big decision to make – where would they go to receive care for their little girl? Montana wasn’t an option, so they packed up all their belongings and moved. Read full post »

A Mother’s Journey to Find Hope for Her Baby Diagnosed with CDH

IMG_20150223_091708440This week, in honor of Mother’s Day, we’re sharing stories about mothers who have found hope through their child’s difficult diagnosis and become advocates for other parents and families. Read below about Kara Strozyk’s incredible journey to find a silver lining in her son’s life-threatening condition.

Kara Strozyk was expecting a normal ultrasound at a routine prenatal appointment with her OB-GYN in Olympia, Wash., 19 weeks into her pregnancy. What should have been one of the best days of her life, quickly turned into one of her worst. “How does he look?” Strozyk asked the ultrasound technician.

The ultrasound image revealed the unthinkable, an abnormality with the baby’s stomach, small and large intestine, spleen and liver; they appeared to be in his chest. Strozyk was in disbelief. Her baby was prenatally diagnosed with a congenital diaphragmatic hernia (CDH), a hole in his diaphragm, a potentially life-threatening condition.

The advice she received only added more fear to the diagnosis: “Stay off the internet.” Read full post »

Child Protection Experts Respond to Abusive Head Trauma Critics: Would You Shake Your Baby?

ThinkstockPhotos-510903253In recent years, the diagnosis of abusive head trauma (AHT), historically referred to as shaken baby syndrome, has been the focus of great debate in court rooms and media headlines across the country. The debate has focused on a few key questions: Does AHT really exist? Can shaking really cause brain injury or death in infants?

“Having people believe that abusive head trauma doesn’t exist and that shaking an infant is harmless is a public health danger,” said Dr. Carole Jenny, a child abuse physician in Seattle Children’s Protection Program and at Harborview Medical Center, who has more than 30 years of child protection experience. “Parents and caregivers need to be aware that abusive head trauma as a result of shaking is a real thing that can happen – it does happen – and it has devastating, lifelong or fatal consequences.”

Dr. Christopher Greeley, who is a child abuse expert and associate professor at the University of Texas Medical School at Houston, said that it comes down to this: “Would you shake your newborn baby?” Read full post »

Meet Our New CEO, Dr. Jeff Sperring

Seattle Children's new CEO, Dr. Jeff Sperring

Seattle Children’s new CEO, Dr. Jeff Sperring

This week, the next chapter of Seattle Children’s journey begins with the arrival of our new CEO, Dr. Jeff Sperring. Even though it’s his first week on the job, he is no stranger to leading a world-class pediatric hospital. Sperring most recently served as president and CEO of Riley Hospital for Children at Indiana University Health, one of the largest children’s hospitals in the U.S. He was at Riley since 2002 and also served as Riley’s chief medical officer, associate chief medical officer and director of pediatric hospital medicine.

Sperring earned his medical degree from Vanderbilt University School of Medicine and was a pediatric resident at the Naval Medical Center San Diego. After residency, he served as a United States Navy Medical Corps officer in Twentynine Palms, Calif., for three years. Read full post »

This Schoolhouse Rocks: Inside the Classroom at Seattle Children’s

Thanks to the hospital school, Brighton Smith learned to believe in herself again after cancer robbed her of her confidence. Help us celebrate the teachers who shine the light of learning – and personal growth – into the dark corners of illness. GiveBIG to Seattle Children’s on May 5 (GiveBIG and National Teacher Day). The Seattle Foundation along with a generous anonymous donor will help you stretch your gift by matching donations dollar-for-dollar, up to $10,000. Your generosity provides concrete resources like laptops and textbooks for the hospital schoolroom.

Brighton Smith, 11, visits with Lisa Schab, the teacher in Seattle Children's Schoolroom she calls her "hospital mom."

Brighton Smith, 11, visits with Lisa Schab, the teacher in Seattle Children’s Schoolroom she calls her “hospital mom.”

Brighton Smith didn’t feel well. Several weeks of battling chills and fatigue had left the 11-year-old wanting to sleep all the time. Her mom, Cassia Smith, worried she might have mono or even be depressed. Then a trip to her primary care provider yielded a very scary turn of events: a referral to Seattle Children’s and a diagnosis of leukemia – all in the same day.

Once on the Cancer Care Unit, everything but Brighton’s treatment fell by the wayside; that’s when Lisa Schab, a middle-school teacher from Seattle Children’s School Services, dropped by Brighton’s hospital room. Read full post »

The Heart of Racing Wins for Seattle Children’s Heart Patients

IMG_4995The Heart of Racing team is focused on two things – winning races and raising money for kids at Seattle Children’s. They race, and win, for children who need complex cardiac care. And their checkered flag won’t wave until they’ve helped to fix every little heart that needs mending. To date, they’ve raised more than $5 million for Seattle Children’s Heart Center, and helped to fund a new state-of-the art cardiac catheterization laboratory at Seattle Children’s which opened earlier this year.

“When you put the right people together, there’s nothing you can’t do,” said Don Kitch, who founded the Team Seattle Guild at Seattle Children’s and The Heart of Racing Team. “There’s nothing like Seattle Children’s Cath Lab in the world, and we made it happen with a race car! It’s absolutely incredible to think about. We’re giving kids the chance for a happy, healthy life.” Read full post »