On the Pulse

Patients Who Benefited From Life-Saving Heart and Lung Machine Celebrate With Reunion

Jude Xenakis, 10 months, came to Seattle Children's for ECMO when he was born with severe meconium aspiration.

Jude Xenakis, 10 months, with parents Eden and Michael Xenakis and sister Clementine. Jude came to Seattle Children’s for ECMO when he was born with severe meconium aspiration.

This summer, Seattle Children’s hosted a reunion for patients who have one unique experience in common: Extracorporeal Membrane Oxygenation (ECMO) played in key role in saving their lives. Patients, families, doctors and nurses gathered to celebrate the 25th anniversary of Seattle Children’s use of ECMO, an advanced life-support therapy that can replace heart and lung function when these organs fail or need to rest. ECMO is used for a range of life-threatening medical conditions and complications, and Seattle Children’s has been named a Center of Excellence by the Extracorporeal Life Support Organization because of its expertise with technologies such as ECMO.

“Seeing all the kids that ECMO helped save means the world to our doctors and nurses,” said Dr. Michael McMullan, Seattle Children’s Director of Mechanical Cardiac Support and Extracorporeal Life Support (ECLS).

Over the past 25 years, Seattle Children’s ECLS program has touched the lives of more than 700 families. Here we share the stories of a few of these patients – from a cheeky baby to a recent law school graduate – who came together to share their experiences and celebrate where they are today. Read full post »

Before the School Bell Rings: Tips to Get Ready

School supplies line the store shelves, sweaters have replaced swimwear on the racks, football is on TV, and many parents are getting ready to send their kids back to school. As parents start to transition from summer to the school year, it’s important they set their child up for success by beginning to prepare now for the new routine.

“It’s normal for kids to feel both excitement and anxiety as the new school year approaches,” said Dr. Ben Danielson, a pediatrician at Seattle Children’s Hospital and Odessa Brown Children’s Clinic. “When parents focus on the positives, keep their own worries in check, and get organized for the new beginning, it helps their child approach the school year with confidence.”

Here are Danielson’s tips for how parents can prepare for a successful year of learning, growth, hard work and fun. Read full post »

NIH funds $490,000 for Muscular Dystrophy Research in Zebrafish; Family Hopes for Cure

Nick Olson, 7, comes to Seattle Children's for Duchenne muscular dystrophy treatment.

Nick Olson, 7, comes to Seattle Children’s for Duchenne muscular dystrophy treatment.

Tiny, sleek zebrafish could hold the key for how we treat muscular dystrophy in the future. Dr. Lisa Maves, a researcher at Seattle Children’s Research Institute, has received a grant from the National Institutes of Health to study drug combinations in zebrafish for Duchenne muscular dystrophy. It’s one of the most common forms of muscular dystrophy and affects males almost exclusively. The condition, caused by a genetic disorder of the X chromosome, gradually weakens the body’s muscles and occurs in about 1 out of every 3,500 boys.

Nick Olson is 7 years old—a redhead with a toothy smile and a stuffed animal named Puppyroni by his side. Nick has Duchenne muscular dystrophy. What does a little boy like Nick have in common with a zebrafish swimming in a tank? Genes. Zebrafish are perfect subjects for muscular dystrophy research because the same genes that caused muscular dystrophy in Nick cause it in zebrafish, too. Read full post »

New South Clinic Opening Offers Child with Cerebral Palsy a Second Chance

Omari Henry - Web

Omari Henry, 7, at Seattle Children’s South Clinic.

Cynthia Gordon was just 25 weeks into her pregnancy with her son, Omari Henry, when she fell to the floor of her home, seizing uncontrollably. She was rushed to the hospital and Omari was born a short time later.

Thankfully, both mom and baby made it through the delivery, but not without some complications. Omari suffered brain hemorrhaging from the stress of the birth, and he was diagnosed with cerebral palsy.

When Omari was 3 years old, Gordon found Seattle Children’s Federal Way Clinic, which offered occupational therapy and physical therapy. There, Omari made huge strides, but eventually, he needed services the clinic couldn’t provide anymore. Read full post »

Meet the 2015 Family Choice Award Winners

CICU nurse Sherri Kruzner-Rowe with her former patient, Karissa Gossett.

CICU nurse Sherri Kruzner-Rowe with her former patient, Karissa Gossett.

When Seattle Children’s Family Advisory Council opened nominations for the 2015 Family Choice Awards, patients and families responded with more than 200 names – each one belonging to a staff or faculty member who made an indelible impression for all the right reasons.

With great difficulty, the advisory council whittled down the nominations to select four recipients who live and breathe a commitment to family-centered care: Danielle Giles, Sherri Kruzner-Rowe, Jo Ristow and Dr. Kendra Smith. In addition, the graduating residents selected one of their peers – Dr. Amanda Stinger – for the family-centered resident award.

Read on to learn more about the 2015 Family Choice Award winners and what family-centered care means to each of them. Read full post »

Alternative to Steroids and Medication, Novel Diet Helps Teen Overcome Crohn’s

Avi Beach

Avi Shapiro, 15, on a beach in New York, weeks after starting novel diet.

When Avi Shapiro, 15, began complaining of an ache in his stomach, the last thing his mother thought could be the cause was a chronic disease. But after several trips to the doctor, that’s exactly the diagnosis they received.

“I thought the tummy ache would go away, or that maybe he was lactose intolerant,” said Ingrid Elliott, Avi’s mother. “My next thought was, ‘If it’s anything, I hope it’s celiac disease.’ I know how to deal with that. I am gluten intolerant so I know it’s something we could treat with diet.”

After multiple visits to see their pediatrician and a trip to Seattle Children’s for an endoscopy and a colonoscopy, the results were confirmed. Shapiro’s intestines were severely inflamed. He was diagnosed with Crohn’s disease, a form of Inflammatory Bowl Disease (IBD). Read full post »

Study: Young Adult Attitudes on Marijuana Legalization

Marijuana abuse

Marijuana legalization has led some college-age young adults to believe marijuana is safe to use now that it’s legal in some states.

A new study from Seattle Children’s Research Institute (SCRI) shows that marijuana legalization has led some college-age young adults to believe marijuana must be safe to use now that it’s legal in some states. That’s a dangerous assumption says the study’s lead author, Dr. Megan Moreno, a Principal Investigator who studies social media and adolescent health at the Center for Child Health, Behavior and Development at SCRI.

“Marijuana interferes with brain development, and that includes young adults in college,” said Moreno. “About 5% of survey participants expressed that government legalization of marijuana must mean it is safe to use. That might seem like a small percentage. But when magnified on a larger population, it could be a substantial number of young adults who have that perception.”

Read full post »

Epilepsy Research Confirms that Surgery at a Young Age is Beneficial

Bailey Moser, age 5

Bailey Moser, age 5

Neurosurgeons at Seattle Children’s Hospital have long suspected that epilepsy patients who have surgery earlier in life have better outcomes than those that wait. Now they have data to confirm their instincts.

In a study recently published in the Journal of Neurosurgery Pediatrics, lead author Dr. Hillary Shurtleff, neuropsychologist and investigator at Seattle Children’s Research Institute Center for Integrative Brain Research, found that early surgical treatment of focal seizures – those that affect only one area of the brain – in preschool aged children is highly beneficial. The results showed that surgery can reduce the amount of seizures and the number of medications patients are on while helping improve intelligence outcomes. Read full post »

Born with Bladder Outside His Body, Little Boy Helps Others with Rare Condition

Mick as baby - black and whiteWhen Mick Hullinger was born, the atmosphere in the birthing room was not what Leah Hullinger, a first time mother, had envisioned. Although all the ultrasounds had come back normal, as soon as Hullinger’s baby was placed on her chest, she realized something was wrong. Mick was born with bladder exstrophy, in which the bladder doesn’t grow correctly and sticks outside the abdomen, a rare disorder that happens in about 1 in 30,000 babies.

Mick was whisked away by ambulance to a specialty hospital in Salt Lake City, where the family lived.

“It was a whirlwind,” said Hullinger. “I checked out of the hospital only 12 hours after giving birth. I needed to be by his side. I never pictured this would happen; it’s not what you imagine when you’re having a baby.” Read full post »

Preserving Hope for Young Cancer Patients to Have Families in the Future

Shannon Keating had to think about fertility preservation before she began treatment for Hodgkin lymphoma.

Family planning is not the first thing a young, newly diagnosed cancer patient might think about. But for adolescents and young adults facing cancer treatment that could leave them infertile, preserving the ability to have babies should be part of the conversation at the doctor’s office.

A new study published today in Cancer and led by Dr. Margarett Shnorhavorian, a pediatric urologist and researcher at the Seattle Children’s Research Institute Center for Clinical and Translational Research, found a need for increased awareness of fertility preservation for young cancer patients. The study was based on 459 adolescents and young adults who were diagnosed with cancer in 2007 or 2008. The patients were aged 15 to 39 years when diagnosed with germ cell tumor, non-Hodgkin lymphoma, Hodgkin lymphoma, acute lymphocytic leukemia, or sarcoma. Read full post »