On the Pulse

Cancer Survival and the Impact on Long-Term Health

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 »


5-month-old Receives Seattle Children’s 100th Heart Transplant

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.”
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New Report: 15 Million Babies Born Prematurely Every Year

“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 »


What You Need to Know about Organ Donation

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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.”

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Whooping Cough Reaches Epidemic Levels in Washington State

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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 »


Springtime Drowning Risks in Open Waters

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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 »


Kidney Donor Shortage Impacts Children with Chronic Kidney Disease

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The good news: Today, children who undergo a kidney transplant have a 95% chance of surviving five years or more after surgery. That’s thanks in large part to the remarkable improvements made in anti-rejection medications over the last few decades.

The bad news: The average life span of a replacement kidney is only 10-15 years. This leaves many children with certain types of chronic kidney disease essentially “outliving” their replacement kidneys as they grow into adulthood. As a result, a new subset of patients has emerged – those needing repeated kidney transplants throughout a lifetime. Waiting for an organ can be a grueling marathon with some adults waiting years for a kidney. In the U.S., more than 97,000 people are waiting for a kidney. To make matters worse, common myths persist surrounding organ donation preventing many people from becoming registered organ donors.

Why we should be talking about this now

As April marks Organ Donor Awareness month, this provides an opportune time to provide a reminder about the benefits of organ donation, and to encourage people to register as organ donors. Read full post »


Cystic Fibrosis Drug Breakthrough: Q&A with Dr. Bonnie Ramsey

Dr. Bonnie Ramsey of Seattle Children’s Research Institute was honored today, April 18, in Washington, D.C. for her work on clinical trials of Kalydeco, a cystic fibrosis drug approved by the U.S. Food and Drug Administration (FDA) this year. She is a co-recipient of the award with Dr. Frank Accurso from the University of Colorado.

The Clinical Research Forum, a nonprofit organization that promotes understanding and support for clinical research and its impact on health and healthcare, put Dr. Ramsey’s work on a Top Ten list of outstanding clinical research projects across the country.   Some of Dr. Ramsey’s fellow award winners were behind research that:  is helping prevent complications after bone marrow transplantation; uncovered new therapies for leukemia; found that early treatment with medications can prevent HIV transmission. Read full post »


Crying Babies Live Facebook Chat

Have you, a family member or friend ever felt like a failed parent when a newborn cried inconsolably despite your best efforts to comfort the child?  It’s a common feeling.  New parents – and even experienced caregivers – can easily feel overwhelmed or frustrated by an infant’s crying. It can be a nerve-wracking experience, and often people think they must be doing something wrong.

There are many misperceptions about babies crying, and well-intended advice from family and friends may be inaccurate, increasing frustration and anxiety. The reality is all infants have extended bouts of crying, and there are effective ways to cope with it. Read full post »


Pinwheels Planting Raises Awareness of Child Abuse Victims

To recognize April as National Child Abuse Prevention Month, Seattle Children’s Hospital will place thousands of pinwheels around the hospital campus this week. Each pinwheel represents a child who has suffered abuse, and people may purchase their own pinwheels at hospital gift shops to place outside. All proceeds will go to Seattle Children’s Protection, Advocacy and Outreach Program. Read full post »