Julie Kobayashi, a 12-year-old girl from Hawaii, is Seattle Children’s third patient to receive the HeartMate II ventricular assist device (VAD), a device that allowed Julie to leave the hospital while waiting for a life-saving heart transplant. This is her story, from failing heart to transplant.
Julie Kobayashi started feeling sick on a Saturday in November 2013. She felt nauseous, but didn’t have a fever. The symptoms reflected that of the stomach flu. Her family wasn’t overly concerned at first. They thought the symptoms would subside and their daughter would be back to her normal self in no time. For Julie, an active and fun-loving 12-year-old, she usually didn’t let anything slow her down for too long.
When Monday rolled around, Julie felt well enough to go to school. She enjoyed school and had been working really hard practicing her clarinet for an upcoming concert. Missing school wasn’t an option in Julie’s mind. Read full post »
Meet Olivia Rickert and Michile Smith: Two generations apart, but linked forever by their special hands.
When Olivia Rickert was still in utero, an ultrasound at 20 weeks revealed that she had inherited a genetic mutation passed down from her mother and maternal grandmother. In Olivia’s case, the mutation was expressed as a cleft (split) hand. Though most kids born with this condition have no other health problems and can overcome their hand difference naturally or with surgery, Olivia’s mom (Stephanie Rickert) worried it might signal worse news. Stephanie had little outward sign of the mutation, but her mother, Michile Gormley Smith, was born with split hand/split foot absent long bone syndrome — claw-like hands and feet and legs missing tibia bones. (Smith was treated at Seattle Children’s starting in 1958 by pioneering orthopedist Dr. Ernest Burgess.)
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In honor of World Down Syndrome Day, Melanie Harrington shares excerpts from her blog, Our Journey Through Life – a rich chronicle of a baby’s fighting spirit and a mother’s courage to walk “the road less traveled” and arrive a better person.
May 2012: Our world changes forever
We get the call we’ve been dreading: the baby boy I’ve been carrying for 15 weeks has Down syndrome. What?! How can this be? I’ve done everything right. I don’t drink, smoke, take medicine or eat foods I’m not supposed to eat. Why me? Why us? I am mad, sad, anxious and confused. Will we be able to love this baby? What does his future hold? Bullying, dependence, frustration? And, what does my 2-year-old son Cody’s future hold? Constant defending? Jealousy?
I’m feeling very un-mommy-like thoughts that I never thought I could feel about my unborn baby. Can I handle this? Can my husband, Chuck? Will our marriage survive? Right now, I don’t know the answer to these questions.
My doctor refers us to a genetic counselor for more testing. I don’t really gel with the first counselor, so she refers me to Seattle Children’s Genetic Counseling Clinic. This counselor immediately puts me at ease and I like her honesty. I also see Dr. Margaret Adam, who is wonderful and gives me lots of helpful information. Dr. Adam reassures me that Down syndrome can affect any family – one out of every 800 babies born in the U.S. has the condition.
June 2012: Grief…then acceptance
I still feel out of control – so desperate to understand what is really happening. I go to sleep and wake up not remembering if the diagnosis is a dream or real, then I remember. We cry a lot and worry all the time. We grieve for the child we thought we were having and we don’t know if we can ever come to terms with the child we are having.
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Austin Dunlap, middle, with Professional Bull Riders Chase Outlaw, left, and Ty Pozzobon, right.
Thanks to a visit from a few very special cowboys, today is a day that 16-year-old Austin Dunlap will never forget. Dunlap, who is being treated for Acute Lymphoblastic Leukemia at Seattle Children’s Hospital, is a big fan of Professional Bull Riders (PBR). But due to his recent bone marrow transplant, he is unable to attend their event this weekend in Tacoma and wished the riders could instead come to him. And so, Seattle Children’s Pediatric Advanced Care Team (PACT) contacted PBR and made it happen!
Dunlap and his family met bull rider, Ty Pozzobon, and 2013 PBR Touring Pro Champion, Chase Outlaw. Pozzobon and Outlaw brought Dunlap signed PBR gear and hung out while watching videos and swapping rodeo stories.
Dunlap had some fun stories of his own as he has been involved in rodeo events in Montana from the time he could walk. From mutton busting to riding steers and team roping, he is no stranger to the rodeo.
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Victoria Millard, left, and Linda Severt, right, captivate patient Karsten Hendricks, 2, with music and bubbles (courtesy of John Curry Photography)
If you happen to stroll through Seattle Children’s Hospital’s medical or surgical unit on a Tuesday, you’ll notice something’s a little different – the air feels a little lighter. You’ll likely hear sounds of music and laughter flowing through the halls, and you may even encounter a juggling act.
The spirits of patients, families and staff are a little brighter on this day because of a couple of clowns. No really – a few actual clowns that are a part of the Room Circus Medical Clowning group.
Hanging out with the clown posse
I was recently lucky enough to get a chance to tag along with a few of the clowns during their visit at the hospital. In spending the day with Victoria Millard (aka Dr. LaFoo), who is executive artistic director of the group, and Linda Severt (aka Dr. Hamsterfuzz), who is the program manager, I witnessed firsthand the joy they brought to everyone they encountered – patients, parents and staff alike.
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