While tremendous advancements have been made over the past several decades in treating cystic fibrosis (CF), many CF therapies are not one-size-fits-all. What works for adult patients doesn’t necessarily help very young patients. And yet, it’s critical to begin therapies early in life to delay lung disease caused by CF from progressing.
Inhaled hypertonic (extra salty) saline is one such therapy recommended for many CF patients age 6 or older, but its effectiveness has never been evaluated in patients age 5 or younger. Despite this, since 2007 inhaled hypertonic saline has been increasingly used among U.S. children with CF ages 2 to 5.
Several years ago, Australian researchers stumbled on the benefits of hypertonic saline when they noticed that surfers with CF had fewer respiratory flare-ups than people with CF who didn’t surf. The researchers speculated that the salty mist of ocean water lessened respiratory CF symptoms and their subsequent study confirmed their hypothesis. Read full post »
Sometimes even a simple idea can make a difference in people’s lives. In my case, I hope that the creative adaptation of a simple science concept will one day save the lives of premature infants in the developing world.
As a program manager in the Center for Developmental Therapeutics, I support researchers working in the realm of preterm birth and neonatal health. So far, the main focus of that work has been on treatment options for premature infants, including the development of the Seattle Children’s Positive Airway Pressure ( Sea-PAP) device, an easy to use respiratory support device for preemies.
The aim of my research project is to investigate new ways of easily and inexpensively diagnosing lung immaturity in premature infants. Premature birth is a leading cause of neonatal death in the U.S., but not many people realize that it is also a huge issue in developing countries. New research has shown that 15 million premature babies are born each year, and helping preterm infants everywhere lead long, healthy lives is an important goal of my research. Read full post »
It didn’t take Kelly Clarkson very long to find out about Seattle Children’s Hospital patient Chris Rumble’s uplifting music video of her song “Stronger.” Chris posted the video on Sunday and by Tuesday Kelly tweeted, “Oh my goodness y’all have to see this! It’s beautiful! I can’t wait to visit these kids and nurses! It’s Seattle Children’s Hospital, I believe. God Bless y’all!”
Kelly was so moved that today she sent a video response to Chris and all the patients, families, and staff in Seattle Children’s Hospital’s Hematology Oncology unit. Everyone was so excited to hear from her, including many of the video’s star performers.
Check out Kelly’s video and the excitement it created with our patients, families and staff:
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 »
For children and their families, surviving cancer is an incredible triumph. The good news is that about 80 percent of children who have cancer now survive their disease (National Cancer Institute). However, this important milestone also marks the beginning of a child’s lifelong journey as a cancer survivor – A journey that may be difficult as their disease and treatment can affect their health for many years to come.
While cancer recurrence may be the overriding fear for many cancer survivors, a recent national study found that nearly half of survivors die of something other than cancer later in life, such as heart disease or diabetes, underscoring the importance of survivors being aware of their long-term risks and overall health. This especially rings true for childhood cancer survivors where about two-thirds suffer from at least one chronic health condition and about one-third have a life-threatening condition, according to a 2006 study in the New England Journal of Medicine. 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 »
“Baby born at 1 pound now a thriving 5-year-old” “Barely over a pound when born, miracle baby will go home” These are just two of the headlines that have crossed the wires in the past week. And while they convey the hope and possibilities now available to babies born too soon in the developed world, they fail to paint an accurate picture of premature birth.
Premature birth has become the second leading cause of death in children under the age of five, killing 1.1 million infants worldwide. In the United States and other developed countries, medical interventions are able to save many preterm babies, resulting in the “miracle baby” stories we see each week. The story that’s rarely reported is that these babies often face a lifetime of disability that may include cerebral palsy, brain injury, or respiratory, vision, hearing, learning, and developmental problems. The impact on families is huge; economic turmoil from medical bills, lost wages if a parent is needed full-time at-home to address the medical challenges, and emotional strain from managing the situation. Read full post »
Good news! Today, Facebook CEO, Mark Zuckerberg, announced a plan to encourage Facebook users to indicate their organ donor status on their Facebook pages. Under the plan, Facebook members can register to become organ donors via links on Facebook to online state registries. Given the company’s social networking muscle and global reach, some organ donation experts are speculating Facebook’s plan could radically increase the number of registered organ donors in the coming months.
“Transplantation is the best solution to end stage organ failure. This is a historic moment for organ donation and awareness. Organ shortage is a global public health problem. Mark Zuckerberg’s initiative, with Facebook’s global impact, will tremendously increase awareness which will result in more lives being saved, ” said André A.S. Dick, MD, MPH, FACS, Assistant Professor of Surgery in the Division of Transplantation at Seattle Children’s Hospital. “As of today, there are 114,000 wait list candidates in the U. S. and the gap between donors and recipients is increasing every year. The American Society of Transplant Surgeons and the transplant community support the campaign and hope it goes viral.”
Pertussis, aka “whooping cough”, has reached epidemic levels in Washington state and elsewhere throughout the country. Whooping cough, an infection of the respiratory system, spreads from person to person easily and can be life-threatening. Infants and children who haven’t been immunized can get seriously ill if they get whooping cough.
Public health officials are asking everyone to make sure they’re up-to-date with vaccines. It’s especially important for anyone who has close contact with babies younger than 12 months to get vaccinated to help protect the baby from whooping cough. This includes parents, siblings, grandparents, health care providers, and child care providers.
Experts believe a growing hesitancy toward vaccination in general, as well as the fact that many adults don’t realize they need to get vaccinated against pertussis have contributed to Washington’s whooping cough epidemic. Vaccination decreases the chance of contracting and spreading whooping cough. Read full post »
In the U.S., drowning is the second-leading cause of injury death for children, according to a report from the Centers for Disease Control. Most drownings occur in lakes and rivers. Children ages 1-4 and 15-19 are at highest risk. Non-fatal drownings are nearly five times higher in number, and can cause long-term disabilities including brain damage, memory problems, learning disabilities or permanent loss of basic functioning.
Why we should be talking about this now
While the weather is warming up, lakes, rivers and streams in the many parts of the country are still extremely cold, and snowpack melt feeds rivers that are running deep, cold and swift. Sadly, it is at this time of year that drowning deaths often occur as people venture into these waters without appropriate lifesaving gear and lifeguard protection. Preparation, planning and extreme caution in activities around open water are needed to prevent drowning. Read full post »
Seattle Children’s provides healthcare for the special needs of children regardless of race, color, creed, national origin, religion, sex (gender), sexual orientation or disability. Financial assistance for medically necessary services is based on family income and hospital resources and is provided to children under age 21 whose primary residence is in Washington, Alaska, Montana or Idaho.