As a medical resident, Dr. Ben Wilfond remembers working with a family whose baby had trisomy 21 (down syndrome). He was with the physician when she first talked with the family about their new baby. “She walked in, introduced herself, and the next thing she said was, ‘Congratulations on your baby,'” Wilfond said. The remark took him by surprise. “As a resident, I could see the problems this child was having and I knew some of what was ahead for this family. But the doctor did not deprive them of their celebration, and she chose not to focus on the fact that the child had a disability.”
This situation isn’t always the norm. Dr. Wilfond is a co-author of a new study published in Pediatrics that found parents with children with trisomy 13 and 18 have challenging encounters with health providers. Children born with trisomy 13 and 18 have low survival rates and survivors have significant disabilities. They have traditionally been treated with palliative care. Read full post »
Physicians and researchers can get any number of awards over the course of a career. Landing a Nobel Prize is the tops, of course. But Bonnie Ramsey, MD, received a different sort of honor this week. She christened a petroleum barge in Portland that bears her name. Dr. Ramsey is quite excited about the honor, even if it doesn’t seem very medically mainstream.
“It’s a unique award,” she said. “It’s not the sort of thing most people get, to have something that huge be named after you,” she said, with a smile. Barges can measure more than 400 feet long, bigger than a football field. A barge of this size carries more than 3.5 million gallons in fuel, too.
They say that humor can be great medicine and this rings true for 18-year-old Abigale Hamlin, a leukemia patient being treated in Seattle Children’s Hospital’s Adolescent and Young Adult Oncology Program. Abigale says that a good dose of laughter in her situation helps her to see and think of things in a different light.
Last year, when she first heard Chris Brown’s song featuring Lil Wayne and Busta Rhymes, “Look At Me Now,” her witty and creative nature took hold and her inner rapper emerged as she flowed to the beats with her own lyrics that described what she was going through, “Look at me now, look at me now, I’m losin’ hair-air, or I’m gettin’ che-mo.”
“I’m the kind of person who sings a song and puts my own words to it because I think it is funny,” says Abigale. “Then I thought, how funny would it be if I took the lyrics and made this song cool and funny in my own way!” Read full post »
Saturday, May 5th, was unlike any other day on Seattle Children’s Hospital’s Hematology Oncology floor. The beats of Kelly Clarkson’s song “Stronger” rang through the halls as patients sang out the familiar chorus, “What doesn’t kill you makes you stronger…”
Doctors, nurses, parents and patients showed off their best dance moves while harmonizing to the tune with big smiles on their face. Patients held up signs with the words “hope” and “fighter” – all communicating the important message that they are strong.
This fun celebration of strength was thanks to Chris Rumble, a 22-year-old Children’s cancer patient who lives in Kent, Wash., who was recently diagnosed with leukemia in April. Chris had the idea to make a music video to share with his old hockey team in Wenatchee because his teammates had made him a music video for his birthday. Read full post »
Despite being born premature at 30-weeks gestation, Rachel Robbins’ new baby boy Ethan was an extremely alert and cheerful newborn. But at three days old, doctors first noticed that something was not right with Ethan. He had a heart murmur. The cause, ventricular septal defect (VSD), a hole in his septum located in the middle of his heart. Due to the hole, when his heart would contract, Ethan’s aorta would become so blocked that blood could not get out of his left ventricle causing pressure on his lungs.
It was only one week later that Ethan developed congestive heart failure. By the time he was six weeks old his condition had worsened so that doctors diagnosed him with hypertropic cardiomyopathy, a genetic condition that may have been inherited from Rachel that caused the left ventricle of Ethan’s heart to enlarge and thicken in utero.
“He began to have difficulty breathing, he was sweating, and had a greyish-blueish color in his skin,” said Rachel. “He was also sleeping a lot more than he should have been, and it appeared he was using most of his energy to breathe. I knew something was not right.” Read full post »
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