Pulmonary vein stenosis (PVS) is a rare disease in which abnormal cells build up inside the veins responsible for carrying oxygen-rich blood from the lungs to the heart. It restricts blood flow through these vessels, eventually sealing them off entirely if left untreated. Typically affecting young children, the most severe form of PVS progresses very quickly and can cause death within a matter of months after diagnosis.
Until recently, treatment options have been limited to keeping the pulmonary veins open through catheterization or surgery. Yet this approach only removes the cells but does nothing to prevent their regrowth. Now, a clinical trial shows that adding chemotherapy to a treatment regimen including catheterization and surgery can deter abnormal cellular growth and finally give children with PVS a chance to grow up.
“Through this approach, we’ve created the first-ever population of survivors who are living with severe PVS,” saysChristina Ireland, RN, MS, FNP, who has managed enrolling patients in the trial and treating new patients since the trial ended. “We’ve changed this disease from an acute killer to a chronic, manageable condition.” …
Stepping into Dr. Jean Connor’s office, the first thing you notice is color. So much color. Bella, Connor’s 9-year-old daughter, has decorated the space with handmade inspirational signs and artwork that explode with vibrant energy. “That’s how I innovate,” says Connor. “I like having all that positive energy around me.”
Connor, who has her PhD in nursing, directs nursing research at the Boston Children’s Heart Center. She was the first nurse to complete her post-doc at the Harvard School of Public Health and received a Champions in Healthcare award from the Boston Business Journal in 2012. Connor’s work translates industry research into actionable lessons and innovations that improve care at the bedside. In 2009, she developed a nursing acuity measurement tool called CAMEO (Complexity Assessment and Monitoring to Ensure Optimal Outcomes) that has since been validated to measure nursing workload across all pediatric and neonatal settings in the United States.
“I absolutely love my job,” Connor says. “I never thought I’d leave the bedside, but I feel like I’m impacting what happens at the bedside. We each have our ability to contribute to make the best possible experience for patients and families.”
Scroll over the items around Dr. Connor’s office to learn more about what inspires her.
From a series on researchers and innovators at Boston Children’s Hospital
Margaret McCabe, PhD, director for nursing research in the medicine patient services at Boston Children’s Hospital, is an unlikely hacker. A former techno-phobe and chronically fatigued mother of four, McCabe didn’t think she had time for another project.
Some opportunities, however, are too good to resist. That was the case when McCabe, who thrives on interacting with people who think outside of the box, started brainstorming with colleagues about Hacking Pediatrics.
She signed as a co-founder of the group, an organization of self-described geeks from Boston Children’s and MIT’s H@cking Medicine committed to hacking the status quo in pediatric health care. “It’s the attraction to innovation,” she confesses.
McCabe describes the lure of hacking and the role of nurses in innovation. …
Registered nurses (RNs) remain the largest group of health care providers and typically account for the greatest share of most U.S. hospitals’ operating budgets, about 60 percent. In adult hospitals, research has shown a consistently positive effect of increasing percentages of nurses with baccalaureate educations, and linked increased RN staffing and healthy work environments with improved patient outcomes.
However, this assessment has not been conducted in children’s hospitals—until now.
In a study in the Journal of Nursing Administration, nursing leaders from 38 free-standing children’s hospitals explored which nursing and organizational characteristics influence mortality for children undergoing congenital heart surgery.
The study, involving 20,407 pediatric patients and 3,413 pediatric critical care nurses, was led by Patricia Hickey, PhD, MBA, RN, from the Heart Center at Boston Children’s Hospital.
In pediatrics, congenital heart disease is the most common birth defect requiring surgical intervention for survival. Due to their critical care needs, these patients consume a disproportionate share of U.S. hospital resources. …
When we think about innovation, especially in health care, our thoughts often turn to the highly complex: new surgical procedures, new drugs, new devices or machines, etc.
But innovation in medicine and patient care doesn’t have to be complex. Sometimes it can be very simple. Like a hat.
Karen Sakakeeny has been a clinical nurse for more than 30 years, spending much of that time in the operating room. While doing a stint in cardiac surgery, she found herself thinking about ways to improve the rewarming process for infants undergoing open heart surgery. …
[Ed. Note: This is the first in a series of six occasional posts about Children’s Hospital Boston staff who received Patient Services Research Grants in 2011. This grant program engages the professional staff in the Department of Patient Services in high quality pediatric research with the ultimate goal of improving child health.]
It has been nearly 20 years since the American Academy of Pediatrics released the recommendations that fueled the “Back to Sleep” campaign, which encourages parents to put babies to sleep on their backs to reduce the risk of sudden infant death syndrome (SIDS). And it’s worked: In less than 10 years, the rate of SIDS deaths dropped by more than half.
But with this drop came an upsurge of brachycephaly – a “positional head shape deformity” characterized by a gradual flattening of the back of an infant’s head from resting on a firm or semi-firm mattress. …