On the Pulse

Jennifer’s story of struggle and hope after twin boys born at just 24 weeks

In honor of World Prematurity Day this Sunday, Nov. 17, Jennifer Sinconis shares her twin boys’ incredible struggle and journey after being born at just 24 weeks, each weighing only about a pound.

Aidan and Ethan todayI remember finding out I was pregnant. My husband and I had just started trying, and we couldn’t have been happier. I also remember the shock when I found out I was carrying twins – identical twin boys. My pregnancy was pretty easy and uneventful. I was young and healthy, so we really didn’t have any major concerns. Looking back, that shows exactly how naïve I was of the potential complications that can come during a pregnancy.

The day that I hit 24 weeks I ended up being rushed to the ER. My placenta had detached, I was hemorrhaging and my boys were on their way. The doctors tried unsuccessfully to stop the labor. I remember asking my OB-GYN what this meant. What would happen if my children were born this early?  His response was simply, “It’s not good.”

Born 16 weeks premature, Aidan weighed 1 pound, 14 ounces and Ethan weighed 1 pound, 6 ounces. Neither one was breathing when they were born. The doctors were able to resuscitate Aidan fairly quickly, but Ethan took about five minutes. His throat was so tiny that they had a hard time getting the ventilator tube in.

My world shattered. I was not able to move after my emergency C-section, and it was over 24 hours before I was allowed to see my boys. I remember the panic in my mom’s face that evening – she was sure that I would miss the opportunity to see them alive.

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National Diabetes Month: Helping families manage the disease

SONY DSCOdds are you know someone with diabetes – a parent, sibling, aunt, uncle or family friend. According to the Centers for Disease Control and Prevention (CDC), more than 25 million people in the U.S. currently have diabetes, and it is one of the most common chronic diseases in children and adolescents. About one in every 400 children and adolescents has diabetes. That’s a lot of finger pricks and insulin shots, which is why, in recognition of National Diabetes Month, Seattle Children’s Hospital’s diabetes expert, Karen Aitken, ARNP, offers advice to parents to help manage a child’s diabetes. Read full post »

Going old school: Researcher encourages walking school bus to prevent childhood obesity

Walking school bus

More than one third of children and adolescents are obese or overweight, and more and more families are coming to Jason Mendoza, MD, MPH, for advice on how to help their kids lose extra pounds. But obesity treatments can be difficult to complete and are often expensive. Mendoza is testing a new approach that aims to prevent obesity using ideas from eras when obesity was uncommon.

“I’m looking at whether getting children to walk or ride their bikes to school can increase children’s physical activity and reduce their risk of obesity,” said Mendoza, a principal investigator in the Center for Child Health, Behavior and Development at Seattle Children’s Research Institute and associate professor at the University of Washington.

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Silk Road online marketplace for illicit drugs reemerges, tips for parents

In today’s digital age, it seems you can find and buy almost anything online, of course with a few exceptions. However, this is shockingly more true than one would think with a website called the Silk Road. The name may sound harmless, but it’s actually an anonymous online market place for illegal drugs like marijuana, cocaine and ecstasy. The site uses software that hides a buyer’s search engine and reroutes their traffic to make purchases anonymous and untraceable.

Who would have thought an eBay for illicit drugs could exist?

The original Silk Road site was shut down in early October by the Federal Bureau of Investigation, but headlines this week have reported that a new Silk Road site has emerged. The new site claims it offers enhanced security and privacy for users.

Yolanda Evans, MD, MPH, of Seattle Children’s adolescent medicine division, was dumbfounded when she heard about the site at a symposium last week. She also learned that many teens are aware of how to get drugs online.

“What does this mean for parents of teens? To me, it re-enforces the need to monitor what our teens are doing on the internet,” said Evans. “I’m not endorsing sitting over their shoulders every time they’re on the Internet, but I do think parents should periodically check in.”

In a Teenology 101 blog post, Evans discusses this issue and offers tips for parents about how to best monitor and be aware of their teen’s online activity. She also advises that parents should trust their gut and if they are concerned about their teen’s Internet safety or possible drug use, they should have a conversation with them and talk with their doctor about resources.

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Halloween in the hospital

Kid Painting PumpkinHalloween is meant to be the spookiest night of year. Full of ghouls, goblins and ghosts, it’s the one time we delight in all things that go bump in the night. But for children and families who will be spending Halloween in the hospital, it’s difficult for them to enjoy the holiday festivities. This is why Spirit Halloween, the largest seasonal Halloween retailer in North America, brings fantasy and fun to Seattle Children’s Hospital every Halloween, with costumes, crafts and pumpkin painting.

Since 2006, Spirit Halloween and their Spirit of Children Program has made sure every patient gets the opportunity to transform into the superhero, princess or character of their dreams. They also provide funding to Seattle Children’s through their Spirit of Children Program.

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Tips for having a nutritious Halloween

Halloween&PumpkinsThe leaves are changing colors, the temperature is dropping and pumpkins abound. Halloween is right around the corner and on the minds of every little ghoul and goblin are sweets, treats and the fun of trick-or-treating. But while most children are eagerly awaiting and planning for the candy filled holiday, many parents are wondering how to have fun while reducing the chance of stomach aches and sugar rushes.

Finding a healthy treat to distribute come Halloween night may sound more like a trick, but Mary Jones Verbovski, a clinical pediatric dietitian at Seattle Children’s Hospital, assures parents there are healthy alternatives and ways to incorporate candy into a child’s well-balanced diet.

“Children often get excited about Halloween because it’s the one time of the year that they know they’re going to get a lot of candy, but remember that all of the sugary treats can be hard on your child’s body,” said Jones Verbovski.

Halloween is meant to be fun, but overindulging in sweet treats doesn’t need to dominate a family’s Halloween traditions.

“As long as you treat candy and the holiday treats involved like they are special and ‘once-a-year,’ it can remain a happy and healthy holiday,” said Jones Verbovski. Read full post »

Wedding wish becomes a reality for patient family thanks to cancer care team

The Olivera's wedding day

Photo courtesy of Soulumination

Tuesday was a day that the Olivera family will never forget – It was a beautiful day of unity, celebration and joy. It was a bright spot in what has been one of the most challenging years of their lives.

Oct. 22 was the day that Saul and Alejandra Olivera were finally able to get married after three years of being engaged. “Making it official” was something they were very excited to do and something their 9-year-old daughter, Miranda, had wished for.

From a limo, cake, caterer and photographer, to a chocolate fountain (the most important element for Miranda) – the big day was complete. And it all became a reality, within one week’s time, thanks to three members of Miranda’s cancer care team at Seattle Children’s who made it happen with the help of the community.

“It was the most amazing day and we couldn’t have asked for anything more,” said Alejandra. “Everything was perfect and Miranda was so happy to be there and be a part of the celebration.”

Now, this wasn’t just any wedding – it was extraordinary. And in order to understand its significance, it’s important to understand the family’s journey, as well as the people that were behind the important day.

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The story behind Landon Browne: The 7-year-old who honored his surgeon by dressing up as him for Halloween

Landon Browne and Dr. Jay Rubinstein

During a recent visit to Seattle Children’s, 7-year-old Landon Browne dressed up as his favorite surgeon, Jay Rubinstein, to honor and celebrate him at this Halloween time of year. We suspect you saw the related media coverage, and wanted to share more about Landon, who has captured the public’s interest.

There are landmark moments in every child’s life that a parent likes to document. The first time he rolls over, crawls, stands and walks are among the moments worth noting. But for Alysia and Brendan Browne, the moments they got really excited about for their son, Landon, relate to his hearing.

“When he said, ‘butter’ for the first time, I threw open the front door and yelled, ‘He said, butter!” The neighbors probably thought I was crazy,” Alysia said, with a smile.

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Children’s fights to ensure all Washington families have access to the health services they need

UPDATE: Seattle Children’s reached an agreement with Molina Healthcare of Washington and Children’s is an in-network provider on the plans Molina offers through the state’s Health Benefit Exchange.

National healthcare reform has dominated headlines with the recent government shutdown and the opening of Healthcare Exchanges across the country, offering health benefits to individuals, families and small businesses who are not currently insured.

Seattle Children’s Hospital is taking a stand on the issue, working hard to ensure that children in Washington have adequate access to the care they need, when they need it.

On Oct. 4, Children’s filed a lawsuit against the state’s Office of the Insurance Commissioner (OIC) citing the failure of the OIC to ensure adequate network coverage in several of Washington’s Health Benefit Exchange plans. The suit aims to make sure that children can access the health services they need through the insurance plans purchased via the state’s Exchange, a new marketplace where individuals and families can find, compare and buy insurance.

Today, Children’s is going a step further and filing an administrative appeal requesting the OIC to reverse its decision to approve the Exchange plans from Coordinated Care Corporation (aka Ambetter), Molina Healthcare of Washington, Premera Blue Cross (including LifeWise) and Regence (aka BridgeSpan) because they do not provide adequate network access for plan enrollees. The appeal also asks the OIC to reconsider how it approves Exchange plans so that only plans with adequate networks are approved.

Here, Dr. Sandy Melzer, senior vice president and chief strategy officer at Children’s, answers a few questions about the actions that Children’s is taking to encourage the state to guarantee adequate coverage for kids and families in Washington.

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5 things you should know about a social worker’s role at a pediatric hospital

While many people believe social workers only step in when problems arise, they are often there from the beginning and can be a family’s biggest ally, problem solver and an invaluable resource.

At Seattle Children’s Hospital, social workers are critical to the integrated teams. As families meet with pediatricians, nurses, speech therapists and surgeons, social workers keep in touch with all team members to ensure that each patient is provided with the resources and support they need.

As a social worker in our Craniofacial Center for the past six years, I really enjoy working with our patients and families. I have worked with hundreds of families to help them navigate a difficult diagnosis, sift through medical jargon or just provide a helping hand.

In my experience, here are five things that you should know about the important role that social workers play in a pediatric hospital like Seattle Children’s.

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