This week medical experts from across the country will gather in Seattle to discuss “Cases That Keep Us Awake at Night,” the theme of the 2013 Pediatric Bioethics conference. It’s not uncommon for things to keep us awake at night—a disagreement with a friend or neighbor or anxiety over a big work assignment—but the issues that clinicians and bioethicists will tackle at this confab are quite different.
Most of us, for instance don’t often think about the following questions:
• Should an organ transplant be performed over a family’s objections?
• Should Child Protective Services intervene when a family fails to address the eating habits of a morbidly obese child?
• Should healthcare professionals withdraw medical interventions against the wishes of a family?
Doctors, nurses and others will also discuss the intersection of the personal and the professional, and how it affects their work. At last year’s conference, Douglas Opel, MD, MPH, of Seattle Children’s, spoke about being diagnosed with Crohn’s disease and how it altered his role as a physician. Excerpts from that talk, which was published in its entirety in The Hastings Center Report late last year, are included below.
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On July 13, 2012, Robin Ulness was diagnosed with leukemia at just 9 months old. Gayle Garson, Robin’s mother, said the diagnosis was a complete surprise and it all came on very quick.
“Getting the news was devastating,” Gayle said. “It was like getting kicked in the stomach by a horse. It was so surreal; I just kind of went numb.”
Robin was diagnosed with infant acute lymphocytic leukemia (ALL), which arises from white blood cells called lymphocytes that do not mature properly. While ALL is the most common type of cancer in children, infant ALL is very rare.
Robin’s diagnosis marked the beginning of two years of treatment. Robin came to Seattle Children’s Cancer and Blood Disorders Center and began six weeks of inpatient care. She then had four more rounds of chemo, which required a number of inpatient stays.
While Robin was inpatient, Gayle came up with an innovative idea for something that would not only help her daughter but would also help other children going through treatment.
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The first patient in a cellular immunotherapy Phase 1 cancer trial at Seattle Children’s has had a positive response to T-cell therapy. The 23-year-old patient, Lynsie Conradi, from Bellingham, Wash. received the welcome news yesterday. Conradi signed up for the study after experiencing a second relapse of leukemia earlier this year.
The new treatment involves drawing blood from the patient, reprogramming their infection-fighting T-cells to find and destroy cancer cells, and infusing the blood back into their body.
“Results show that Lynsie has had a positive response to the T-cell therapy and, at this time, we do not detect any leukemia cells,” said Rebecca Gardner, MD, principal investigator for the clinical trial.
The next step for Lynsie is a stem cell transplant, with the aim of clearing the cancer from her body. The goal of the immunotherapy cancer trial was to get her to this stage. Read full post »
One of the biggest surprises new parents face is just how relentlessly a normal, healthy infant can cry during their first few months of life. This crying can lead people to question their fitness as parents, raise unnecessary concerns about their child’s wellbeing and result in overwhelming feelings of anger, frustration and guilt.
Research shows that bouts of prolonged, unrelenting crying is the No. 1 reason parents – and other caregivers – shake a baby. Shaken baby syndrome can cause blindness, seizures, physical and learning disabilities, and even death.
Thankfully, research also has shown that simply understanding the normal pattern of infant crying and learning a few coping skills significantly reduces the likelihood that a child will be shaken or abused. Read full post »
Young people who come to their doctor’s office for care are often not offered shots that they should have, including those for tetanus, diphtheria and pertussis, human papillomavirus and meningococcal disease. “Missed Opportunities for Adolescent Vaccination, 2006-2011” was published June 27 in the Journal of Adolescent Health.
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The Fourth of July is a time for fun and celebration; however, families should follow precautions to ensure a safe and enjoyable occasion. Not only do parents need to worry about firework safety, but families should also keep in mind alcohol and sun safety, too.
Dr. Tony Woodward, medical director of emergency medicine at Seattle Children’s Hospital, recommends some basic safety tips to keep your kids out of the emergency department this year.
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The long, sunny days of summer are the perfect time to get the bikes out of the garage, but parents should hit the brakes and talk to children about bike safety first. Bike accidents are the second-leading cause of serious injury in school-age children. According to the Centers for Disease Control, in 2010, 800 bicyclists were killed in the U.S. and an estimated 515,000 sustained bicycle-related injuries that required emergency department care. Roughly half of these cyclists were children and adolescents under the age of 20.
Tony Woodward, MD, MBA, medical director of emergency medicine at Seattle Children’s Hospital, says most biking injuries occur because a child either isn’t wearing a helmet or is putting themself in a potentially dangerous situation. “Children may see themselves as invincible when they are on a bike, which is not the truth,” says Woodward. Read full post »
Headlines these days related to research funding are grim: “Seattle researchers fear federal cuts will costs lives and jobs” and “Show me the money: Is grant writing taking over science?” are two recent stories that ran in the Puget Sound Business Journal and The Guardian, respectively.
The federal government announced in May that the National Institutes of Health 2013 budget will drop by five percent, or $1.71 billion, to $29.15 billion, compared to 2012. The cuts are part of the effort to balance the budget and, based on what our researchers say, are part of the “new normal” moving forward.
But there’s a bright spot here at Seattle Children’s: Philanthropy for research is increasing, and it’s making a difference.
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On the Pulse recently posted a story on bioethics and research from Ben Wilfond, MD. In that story, Wilfond defended a research study that had been criticized by federal officials over the informed-consent requirements. We thought it would be helpful to follow up with tips for parents who are interested in or have children enrolled in research studies. This is the first in what we hope will be a series on the topic, with both parents and researchers weighing in, to increase awareness about research at Seattle Children’s.
As biomedical researchers, my husband and I are both very invested in the research process. Our daughter, Katelyn, has a disease that is incurable, but we are optimistic that her participation in various research studies could have a positive impact on not only her life, but also on the lives of other children in the future. Nevertheless, we take each opportunity to participate in a study under thoughtful consideration before signing our consent.
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The Washington State Department of Health has designated the neonatal intensive care unit (NICU) at Seattle Children’s Hospital as a Level IV regional NICU, which is the highest level of care available for critically ill newborns. Seattle Children’s is the first hospital in Washington state to receive this designation.
The new designation of Seattle Children’s NICU follows the recent revision of the state’s Perinatal and Neonatal Level of Care Guidelines by the Department of Health in February 2013. The revision is in line with the updated American Academy of Pediatrics (AAP) standards for NICUs that were outlined in September 2012.
The guidelines define four levels of care: normal newborn nursery (level I), special care nursery for premature and mildly ill newborns (level II), neonatal intensive care for very premature and critically ill newborns that sometimes offer select surgical procedures (level III), and regional NICU with comprehensive services to treat all medical and surgical problems of newborns (level IV). Read full post »
