Sutton Piper, age 3
Sutton Piper, 3, was born with a metabolic disorder that made his muscles too weak for crawling, walking and talking. After being referred to Dr. Sihoun Hahn, a biochemical geneticist at Seattle Children’s, Sutton is bouncing on his mini-trampoline and chatting up a storm.
Sutton Piper came into the world on his own terms: nine days late.
At 6 months, he’d made little attempt at rolling over; at 9 months, he showed no interest in sitting up on his own; and, by his first birthday, he wasn’t even trying to crawl. Read full post »
Elise Pele had been in labor for hours awaiting the arrival of her baby girl, Tatiana, on the evening of Aug. 29. Elise remembers wanting desperately to hear her baby cry – a sign that everything was ok. But that cry never came. She saw Tatiana for only a few seconds before nurses rushed her to the neonatal intensive care unit (NICU) at a local hospital.
“I instantly knew something wasn’t right and I was terrified,” Elise said. “The doctors told me my baby wasn’t breathing right and had to be transferred to Seattle Children’s.”
Tatiana experienced meconium aspiration syndrome where she inhaled a mixture of meconium (stool) and amniotic fluid during labor due to stress, which obstructed and irritated her airways, leading her down a path where doctors thought she would likely die. Read full post »
Researchers at Seattle Children’s are constantly asking questions and investigating new treatments with the goal of improving care for our patients. Two investigators from Seattle Children’s Research Institute recently came together to determine the best therapy for children suffering from infantile hemangiomas.
A breakthrough treatment
Before she took propranolol, hemangioma tumors covered Shakira Locke’s face and neck – and blocked her esophagus and airway. After being treated at age 2, Shakira now breathes and eats normally.
Right after Lorene Locke gave birth to her daughter Shakira, she noticed what looked like a rash on the newborn’s face. Three weeks later, doctors found an abnormal clump of vessels, called an infantile hemangioma, growing out of control inside Shakira’s throat and on her neck, face and ear, blocking her airway and leaving her gasping for air.
While most hemangiomas go away on their own and don’t cause problems, children like Shakira need multiple surgeries and procedures to remove the growths. Dr. Jonathan Perkins, an otolaryngologist and an investigator at the Center for Clinical and Translational Research at Seattle Children’s Research Institute, has spent years studying hemangiomas in search of a less-invasive approach. When French researchers discovered that a blood pressure medicine called propranolol could shrink away hemangiomas, Perkins found the breakthrough he was waiting for. Read full post »
Children are at greatest risk for abusive head injuries between about 2 weeks and 4 months of age, when they cry the most and cannot always be soothed.
It’s well understood that head injuries are harmful to children, but just how serious are the effects?
A new study published in Pediatrics reports half of children who experience a severe abusive head trauma before the age of 5 will die before their 21st birthday. The study, led by Ted Miller of the Pacific Institute for Research and Evaluation, also reports the quality of life of children who survive severe head injuries is cut in half.
Dr. Kenneth Feldman, a primary care doctor at Seattle Children’s Hospital and former chair of the hospital’s Child Protection Program, was not surprised by the results of the study.
“These findings are in line with what we’ve experienced in clinical care,” said Feldman, who is also an investigator with the Center for Child Health, Behavior and Development at Seattle Children’s Research Institute. “Abusive head injuries have devastating affects. We know that of the infants that survive these kinds of head injuries, about a third develop life-threatening neurological disorders, another third have moderate dysfunction and the remainder appear healthy, but may experience significant problems in school.” Read full post »
Researchers at Seattle Children’s are sharing their success thus far in treating leukemia using immunotherapy – a technology that uses the body’s own immune system to destroy cancer cells. While scientists are excited about progress of these clinical trials, no one is more grateful for this research than the families of the patients who have benefitted from it.
A tiny girl, a tough decision
Greta Oberhofer with her parents Andy and Maggie and her sister Charlotte.
In March of this year, Andy and Maggie Oberhofer, of Portland, Ore., faced the most difficult dilemma of their lives. Their baby daughter, Greta, was dying. She had been diagnosed with acute lymphoblastic leukemia when she was just 3 months old and standard treatments were not working. Her family prepared for the worst.
“Greta had barely survived chemotherapy and a transplant,” Andy Oberhofer said. “We didn’t want her to suffer any more if she couldn’t be cured. We found ourselves considering end-of-life care for our 1-year-old daughter.”
But then, Greta’s family found hope. Greta qualified for a cancer immunotherapy trial at Seattle Children’s Hospital designed to treat leukemia patients who have relapsed after a transplant. This innovative technology reprograms the body’s T cells and reintroduces them into the immune system, where they hunt down and destroy cancer cells.
“Immunotherapy just made sense to us,” said Oberhofer. “We believed it could work.” Read full post »
Photo courtesy of Paul Joseph Brown/GAPPS
When you see pictures of tiny preterm babies, you likely marvel at how they fit in the palm of a hand, or how a wedding ring can slide up their arm and reach their elbow. What you may not consider is the lifelong toll premature birth can have on a person – if they survive it at all.
New research shows that for the first time ever, preterm birth is now the leading cause of death for all children under age 5 around the world.
More than 15 million babies are born too soon every year, and nearly one million of them don’t survive infancy. Those who do survive are often faced with lasting health issues such as cerebral palsy, developmental delays, or respiratory, vision and hearing problems. The burden is magnified in many developing countries, where world-class neonatal intensive care units, let alone a basic level of healthcare, are not available.
Dr. Craig Rubens, executive director of the Global Alliance to Prevent Prematurity and Stillbirth (GAPPS), an initiative of Seattle Children’s, says a larger, coordinated research effort is critical to lowering the number of babies born preterm. Read full post »
Rohit Nariya, research associate at GAPPS, adds preservative to hundreds of vials before they’re added to the collection kits.
What does a pregnant woman in Yakima have to teach a researcher at St. Louis University? How can a Seattle woman’s healthy, full-term pregnancy impact future pregnancies in Europe or Africa? The answers are closer than you might think.
Over the past seven years, the team at the Global Alliance to Prevent Prematurity and Stillbirth (GAPPS) – an initiative of Seattle Children’s – has worked to increase awareness, collaborations and research in support of their mission to improve the health of moms and babies worldwide.
One big gap (pun intended) the GAPPS team noticed early on was that a collection of widely-accessible, high-quality, pregnancy-related specimens (like cheek swabs, amniotic fluid and cord blood) for researchers didn’t exist. At the time, researchers who needed these types of specimens had to develop their own methods to collect and store them – a time-consuming and costly process.
Enter the GAPPS Repository: a biobank of pregnancy-related specimens that eligible researchers worldwide can access for their research projects. Read full post »
Erik Twede was just 3 years old when he was diagnosed with Duchenne muscular dystrophy, a fatal genetic disorder that causes progressive muscle weakness.
The day doctors told Karen Twede her son Erik had Duchenne muscular dystrophy, she went straight home and searched for the mysterious illness in her medical dictionary. She read: “A progressive muscle disease in which there is gradual weakening and wasting of the muscles. There is no cure.”
“My breath caught in my throat,” Twede said. “It was a terrifying reality to accept.”
Thankfully, several clinical research studies being offered at Seattle Children’s Research Institute are giving hope to parents facing the same devastating diagnosis.
The studies, led by Dr. Susan Apkon, director, Seattle Children’s Department of Rehabilitation Medicine and an investigator in the research institute’s Center for Clinical and Translational Research, offer promise to better treat, or even cure, Duchenne, through the use of new therapies with fewer side effects.
“When I meet with patients with Duchenne and their families today, we have a very different conversation than we might have had 10 years ago,” Apkon said. “Today I ask my patients ‘What do you want to be when you grow up?’ because I believe in their future. I’ve been able to look ahead and see the research being done nationally and internationally and there seem to be treatments on the horizon.” Read full post »
The following is part 2 of our two-part series on ECPR, a combination of CPR and ECMO offered at Seattle Children’s Hospital to save the most fragile patients’ lives. Part 1 covered Hannah Mae Campbell’s incredible story where ECPR and a heart transplant saved her life and allowed her to be the thriving toddler she is today. Here, we discuss how Seattle Children’s has spearheaded a first-of-its-kind ECPR simulation program to improve the process that allows the hospital to save patients in a time of crisis.
In an ECPR simulation in Seattle Children’s neonatal intensive care unit, the surgeon works to get the mannequin on the ECMO pump.
ECPR takes place when a patient goes into cardiac arrest, does not respond to CPR and is then put on Extracorporeal Membrane Oxygenation (ECMO), a machine that functions for the heart and lungs when the organs fail or need to rest. Hannah Mae Campbell’s experience demonstrates the importance of technology like ECMO and why it’s important to continually improve complex, life-saving processes like ECPR.
Since January of this year, Seattle Children’s has executed the largest-scale ECPR simulations in the nation, with medical staff coming together bimonthly to practice as though they were in a real ECPR situation. Even though Seattle Children’s ECPR outcomes are higher than the national average, the hospital initiated the simulations with the goal of standardizing each step of the process to further improve outcomes for patients. Read full post »
In the video above, take an inside look at Seattle Children’s Hospital’s Cancer Care Unit and meet the individuals at Seattle Children’s dedicated to helping children and teens conquer childhood cancer, the second leading cause of death in children ages 5-14.
Tour the country’s first adolescent and young adult cancer unit thanks to a guide who knows the unit all too well, a former patient. See first-hand the cutting-edge research that is saving and enhancing the lives of children and adolescents – from using the body’s own immune system to fight cancer to a relatively new form of radiation therapy that offers hope to children with recurrent neuroblastoma. Read full post »