A unique fashion show took place at Seattle Children’s Hospital this weekend during the Inflammatory Bowel Disease (IBD) Conference, presented by the Northwest Chapter of the Crohn’s and Colitis Foundation of America and Seattle Children’s. To help end stigmas around ostomies, eight children and teenagers with inflammatory bowel disease, ages 8 to 20, walked the runway styled head-to-toe in the latest spring fashions by Nordstrom. Four of the children in the fashion show had ostomies, two did not have ostomies, and two of the models have IBD, but do not have an ostomy.
The only question was: did the audience know which models had ostomies and which didn’t?
Sage Taylor was born with a severe malformation in the right hemisphere of her brain – a condition that caused her to have hundreds of tiny “micro” seizures every day. Here, mom Sam Rosen reflects on their leap of faith with a neurosurgeon at Seattle Children’s and how Sage’s life took a dramatic turn for the better.
Sage Taylor, now 9 years old, came to Seattle Children’s soon after she was born because she was having hundreds of tiny seizures each day.
In October 2005 my husband Don Taylor and I were blessed with a second daughter. All prenatal tests were normal and my delivery was easy. She was perfect, though more restless than our older daughter and not as good of a sleeper.
Three weeks after Sage came into the world, I was taking a post-partum class for new moms. The nurse instructor took me aside and encouraged me to take Sage to Seattle Children’s as soon as possible for an EEG – a test that measures and records the brain’s electrical activity. She explained she thought Sage had a very slight jerkiness of movement in her arms and legs that might not be normal.
And so began our journey with the incredible doctors and nurses at Seattle Children’s. Read full post »
Dr. Sihoun Hahn led a collaborative research study which helped a 10-year-old girl walk for the first time in her life.
A collaborative research study led by Dr. Sihoun Hahn, director of the Biochemical Genetics program at Seattle Children’s and an investigator within Seattle Children Research Institute’s Center for Developmental Therapeutics, has changed the lives of children around the world and helped a 10-year-old girl walk for the first time.
Research answers a parent’s prayer
Bokyung Kim, a 10-year-old living in Korea, spent most of her life confined to a wheelchair. Doctors suspected that she suffered from muscular dystrophy, but were unable to diagnose her condition. Bokyung’s parents prayed that their daughter would walk one day. So when they had the opportunity to enroll Bokyung in a collaborative research study between Seattle Children’s Research Institute, University of Washington School of Medicine and Seoul National University College of Medicine in Korea, her parents were eager to participate.
“This family never lost hope for their child,” Hahn said. “And neither did we.” Read full post »
Marvel superhero Chris Evans (Captain America) and friend Chris Pratt (Star-Lord) today made good on a friendly bet that started between the two on Twitter in January after the National Football League playoffs.
— Seattle Children’s (@seattlechildren) March 8, 2015
The hospital was abuzz as Evans and Pratt brought joy to patients and families at Seattle Children’s. Much like their superhero alter egos, they saved the day in the eyes of the children and teens at the hospital. Read full post »
The language of medicine is full of complicated words and acronyms. For parents of children with serious heart conditions like congenital heart disease or pulmonary hypertension, one such acronymn that may incite fear or worry is hearing that their child may need a device called a VAD (Ventricular Assist Device). However, these devices, combined with Seattle Children’s Heart Center’s medical expertise, save the lives of many children and teens each year.
What is a VAD?
A ventricular assist device (VAD) is a mechanical pump a surgeon implants inside or outside a child’s chest and connects to the heart during open-heart surgery. A VAD can be used for patients waiting for a heart transplant or for patients whose heart muscle needs to rest. Seattle Children’s has a variety of VAD options for patients large and small, from tiny babies to young adults, which aren’t available at every hospital. VAD options at Seattle Children’s include the Berlin Heart, CentriMag and PediMag centrifugal pumps, HeartMate II, Heartware HVAD and SynCardia Total Artificial Heart (TAH).
The newer, fully implantable VADs like the HeartMate II, Heartware HVAD or TAH can also greatly enhance the quality of life for many patients who are awaiting a heart transplant, often allowing them to leave the hospital. For one such patient from Hawaii named Julie Kobayashi, her implantable VAD even allowed her to leave the hospital while she waited for a heart and achieve her dream of playing in the snow for the first time.
To learn about each type of VAD, watch the video above as cardiac surgeons Dr. Jonathan Chen and Dr. Michael McMullan explain the many types that Seattle Children’s offers, and why it’s important to choose the device that best matches a child’s needs.
Jack sits with his uncle (right) who donated his kidney to him.
It can be hard enough to remember to take a multivitamin every day; imagine having to take 20 pills at specific times throughout the day, every day, for your whole life. That’s the reality individuals who have undergone an organ transplant must face. In order to stay healthy and to keep their bodies from rejecting their transplanted organ, a myriad of medications must be taken daily, including immunosuppressants. It can be a difficult pill to swallow, especially for teenagers.
According to research studies, adolescents have the worst outcomes after transplant out of any age group. Adolescents also have the highest rate of non-adherence, which means they either decide not to take their medication or just plain forget, which can lead to the rejection of the organ.
“You can imagine taking that many medications every day could get a little old. It’s a major burden to put on a teenager,” said Dr. Jodi Smith, medical director of kidney transplant at Seattle Children’s Hospital, and a researcher with the Center for Clinical and Translational Research (CCTR). “They were not meant to have this much stuff going on in their life. But if you don’t take your meds, you’ll eventfully need another kidney transplant, and once you lose one it’s harder to get another.” Read full post »
Dr. Stephen Seslar prepares for a complicated surgery using a new, realistic heart model created with 3-D printing.
Kami Sutton, 26, who you met last week, has been waiting for a heart transplant for five years. But surgeons at Seattle Children’s and University of Washington Medical Center (UWMC) are now preparing to perform a difficult surgery that could greatly improve her quality of life and may even eliminate her need for a transplant. It’s possible for the first time ever, thanks to a new, realistic heart model created with 3-D printing. Read full post »
In honor of Congenital Heart Defect (CHD) Awareness Week, 26-year-old Kami Sutton wanted to share her journey that began at Seattle Children’s the day she was born.
26-year-old Kami Sutton
Seattle Children’s is my home. From the previously trademark blue bubble letters, the giraffes (which were recently replaced in the remodel), trains and Mickey Mouse – it is home. It is full of the people who I have trusted with my life since before I can even remember.
I was transferred to Seattle Children’s from a local hospital on Sept. 21, 1988, at only four hours old after being delivered via emergency C-section. I was blue and unable to breathe on my own. My parents were told I most likely would not survive the 30 minute trip down I-5 to the hospital. Read full post »
Julie Kobayashi, 12, traveled from Hawaii to Seattle Children’s for her heart transplant.
Children who need a heart transplant face a frightening waiting game before a donor heart becomes available. They must live with a failing heart for months, or even years, as clinicians strive to keep them healthy enough for transplant. Nationally, these patients face the highest waiting list mortality in solid-organ transplantation medicine, with 17% of children dying while waiting for a heart transplant.
Thankfully, Seattle Children’s has one of the best waitlist mortality rates among pediatric heart transplant centers, as reported to the United Network of Organ Sharing. The hospital also treats some of the region’s most complex, advanced heart disease and heart transplant cases and has one of the highest 3-year patient survival rates in the country.
“We are proud to be ranked among the best pediatric heart transplant centers in the country,” said Dr. Yuk Law, medical director of the Cardiac Transplant/Heart Failure Service at Seattle Children’s. “We have created a team of skilled experts who have dedicated their careers to treating heart failure and transplant cases.” Read full post »
Jennifer Bevaart’s son William was diagnosed with Kawasaki disease in September, 2014.
In honor of National Kawasaki Disease Awareness Day, we are sharing the story of William, a 10-year-old boy who lives with the disease, and why Seattle Children’s, an international leader in Kawasaki disease research, is the best place for children like William to receive treatment.
In September, Jennifer Bevaart’s son William developed a fever that lasted for days. He was lethargic, had a rash on his chest and his eyes were bloodshot. Over the next two weeks, Bevaart took William to at least four different specialists, each of whom suggested a different diagnosis: a sinus infection, walking pneumonia, bronchitis, even scarlet fever. Each treatment failed to ease William’s symptoms. He went from an active, tae kwon do enthusiast to a weak boy who was too weak to walk even the short distance to the mailbox without lying down to rest.
“Call it mother’s intuition, but I just knew something was very wrong with my son,” Bevaart said. “I felt like I was watching him die.” Read full post »
