Every day, extraordinary patients visit Seattle Children’s Hospital and researchers work toward medical breakthroughs at Seattle Children’s Research Institute. From scientific discoveries that make you say ‘wow’ to resilient patients who make you say ‘aww,’ these six blog posts from 2016 struck a chord with readers and were the most popular stories from the year.
The top blog post in 2016 featured Bowen Warren, who was rushed to Seattle Children’s for emergency heart surgery when he was born with three heart defects.
The Heart Center team developed a personalized treatment course for Bowen that included cardiac magnetic resonance imaging, echocardiography and creating a 3-D replica of Bowen’s heart that allowed surgeons to ‘practice’ a complex procedure called a Nikaidoh before getting him in the operating room. Today, Bowen is a happy, healthy and thriving 3-year-old.
Dr. Daniel Rubens is determined to crack the mystery of what causes Sudden Infant Death Syndrome (SIDS). His research suggests that inner ear damage and hearing abnormalities in newborn babies may be linked to SIDS deaths.
A 2016 study in the journal Neuroscience indicated that SIDS may be associated with the build up of carbon dioxide and existing inner ear damage. The finding could be key to understanding why seemingly healthy babies, who might have ear damage that’s not readily apparent, die of SIDS.
Ewan Hart, 3, had a persistent high fever and was hospitalized at Seattle Children’s. Doctors diagnosed him with Kawasaki disease, an autoimmune condition that causes inflammation in arteries and can result in irreversible and devastating damage to the heart.
Dr. Michael Portman published a study in Nutrition Research that showed high soy consumption in infants and young children leads to increased risk of Kawasaki disease. After treatment, Ewan’s recovery from Kawasaki disease has been swift, and he’s back to running around with the toy trains he loves so much.
Laura Crooks, director of Rehabilitation Medicine at Seattle Children’s, lost her son, Chad, to mental illness. Chad was diagnosed with schizophrenia in April 2015. After a long battle and attempts at treatment, Chad lost hope, and chose to end his disease in the only way he saw as an option. Chad died by suicide.
“My husband and I have a new calling to eliminate the stigma associated with mental illness and to impact care so it can truly be effective,” writes Crooks. “It’s a calling to encourage others to talk about mental illness openly and without judgment, so it is no longer perceived as shameful, and is instead seen as what it is — a disease. It’s a calling to improve healthcare so those with mental illness have better pathways for their disease, pathways that create health and hope.”
Charlie Nath, 11, is funny, smart and articulate. He’s a surfer and a drummer. He is not, however, defined by his rare genetic condition: Crouzon syndrome, which occurs when there is an abnormal fusion of the facial bones and skull, affecting the shape of the head and the appearance of the face.
After years of being teased at school because of his appearance, Charlie decided to educate his peers about Crouzon syndrome by speaking to every class in his elementary school. He hopes that by understanding the syndrome, his peers will be able to see past it to who he really is as a person. His message to the world is simple: It’s what’s on the inside that matters the most.
When Harper Foy was born, what seemed like a routine pregnancy took a desperate turn. When Harper emerged from labor, she was encased in a hard, thick skin. She was covered in plaques like armor all over her body. Her skin was pulled so tightly that her eyelids had flipped inside out and blood flow to her extremities was constricted.
Harper has Harlequin Ichthyosis, a severe and extremely rare genetic skin condition. Doctors performed surgery to split her skin, release constriction and increase blood flow. She spent two months in the neonatal intensive care unit (NICU) where staff cared for her with ointments and medication. Harper is doing well and at home now, sporting charming headbands and bows.
“We didn’t think she’d survive,” said her mom, Angie Foy. “And now she’s celebrating her first birthday. She’s our miracle!”