On the Pulse

Two kids, two heart defects – One family’s journey

For the Millers of Silverdale, Wash., Valentine’s Day is extra special this year. For the first time in five years, their calendar is free of surgeries and hospital stays for siblings Tessa and Gabriel, who were both born with heart defects.

A complicated, changing diagnosis

The Millers’ complicated journey began in 2008, before Tessa was even born. Ariana and Chris learned that she had Down Syndrome and an atrioventricular septal defect (also known as an AV canal defect). The defect occurs when the heart doesn’t form properly before birth, leaving a hole in the middle of the upper and lower chambers.

Tessa 7.14.12

Even while she was still pregnant, Ariana began seeing Seattle Children’s Heart Center team. Soon after Tessa’s birth, she met Terry Chun, MD, who has cared for Tessa since she was just a few days old.

“This family has been incredibly resilient,” Chun says. “Even before Tessa was born they’d gotten the news that she had heart disease, but then after she was born, it turned out that she had more complicated heart disease than was initially thought.”

Most babies with Tessa’s defect will need just one surgery when they’re between four and six months old. Instead, she has had five surgeries in less than four years – the first when she was just five months old.

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Honoring my brother and former U.S. Ambassador, Chris Stevens

U.S. Ambassador Chris Stevens, in the field

It was 5:30 in the morning on Sept. 12, 2012. I had just fallen asleep, having been up all night talking with foreign service officers in the State Department, first with news that the Benghazi Mission had been attacked and that my brother was missing, then hours later that he had not survived the night. I called my brother and sister, our parents, and my brother’s girlfriend.

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Building Hope, Part 3: Sustainable and green architecture

A 130,000-pound scarlet oak tree  salvaged and replanted on the Builidng Hope site.

A 130,000-pound scarlet oak tree salvaged and replanted on the Building Hope site.

After several years of planning, Seattle Children’s will open its new Building Hope expansion for cancer, critical and emergency care in a mere 10 weeks. Significant attention has gone into creating the most comfortable, safe and practical spaces for our patients and their family.

We’ve also been attentive in making sure sustainable and “green” design elements are being woven into the make-up of the building. It’s part of our effort to maintain our beautiful Pacific Northwest environment, and because we know that green architecture is healthiest for our staff and those we serve.

 Saving energy, water and preserving habitat

Children’s goal is to obtain Leadership in Energy and Environmental Design (LEED) Gold certification from the U.S. Green Building Council shortly after Building Hope opens. To do that, we have to meet eco-friendly standards for site development, resource consumption, materials selection and the indoor environment – the building blocks of sustainable design and construction.

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Children’s helps state catch ‘Bubble Boy’ condition in newborns

Troy Torgerson's lab helped the state prep for SCID newborn screening

As the 2013 to 2015 state budget moves toward approval this year, immunology researchers and clinicians at Seattle Children’s will be following it as closely as many of us followed last Sunday’s Super Bowl.

They will be cheering for one small line item deep inside the document: A provision to ensure every baby born in Washington is screened at birth for severe combined immunodeficiency (SCID), a rare condition that makes it impossible to fight off infection.

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Patients’ imaginations come alive in animation workshop

As part of Seattle Children’s collaboration with Children’s Film Festival Seattle, professional animators Charlotte Blacker from England and Britta Johnson from Seattle offered two days of animation workshops to hospital patients.

With short stories featuring a wide range of objects and characters from aliens, exploding stars to “banana slips”, patients’ imaginations came alive as they created their stop motion animation films.

To make the films each patient came up with a story idea, made their characters or objects that would be in their film and then moved them in small increments between individually photographed frames. Once the frames were played together as a continuous sequence, their animation was born.

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Maternal exposure to outdoor air pollution associated with low birth weights worldwide

Rush hour

Mothers who are exposed to particulate air pollution, the type produced by vehicles and power plants, are more likely to bear children of low birth weight, according to an international study published today. The study was led by the University of California, San Francisco, and the National Center for Health Statistics at the Centers for Disease Control and Prevention.

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5 tips for raising heart-healthy kids and teens

For National Heart Month, five Seattle Children’s providers share their tips for helping kids and teens build strong, healthy hearts.

Make a heart-healthy resolution for your family this February:

1. Protect young athletes with pre-sport heart screenings

“We’ve all heard stories in the news – the sudden death of a young, competitive athlete due to undetected cardiovascular disease,” says Jack Salerno, MD, director of electrophysiology and pacing services at Seattle Children’s. “It’s every parent’s worst nightmare. One minute your seemingly healthy child is on top of the world competing in a sport they love. The next minute their heart suddenly stops.”

Listening to patientSalerno says parents can help protect their young athletes from sudden cardiac arrest by learning about potential “red flags” before their kids begin competing in sports. “It’s important for student athletes and their parents to work hand-in-hand with physicians to detect any potential risks before the sports season begins.”

The American Heart Association recommends that kids and teens be screened against a 12-point checklist that includes a review of the athlete’s personal and family medical history, and a physical exam by a doctor. The medical history review looks for risk factors like chest pain, elevated blood pressure and unexplained fainting, as well as any family history of heart disease. “A positive response to one or more items on the checklist could trigger further testing, including an electrocardiogram,” Salerno says.

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Craniofacial microsomia: A young boy transformed after surgery

Mavrick before surgery

Seven-year-old Mavrick Gabriel of Kenai, Alaska could be described as being “beyond his years.” He’s compassionate in a way that you don’t often see with young children, and he wants to educate others about his birth defect, craniofacial microsomia, and to help kids in the process.

Mavrick was born without a left ear and with a very small jaw that did not have a joint on one side.  He can’t eat solid foods, has to use a feeding tube and his speech is affected. In June 2012, Gabriel and his family invited television cameras to capture a surgery—one of dozens he’s endured—that helped move him closer to having a jaw.  But he doesn’t want you to feel sorry for him. “Most kids never have to go through this and I’d like to help other people with what I’m going through,” Mavrick said.

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8 activities to get kids outdoors in cold weather

Winter weather can make getting outdoors seem like an ordeal – cold temperatures, snow and ice and a lack of summer sunshine can make even the most outdoorsy family want to stay inside. Pooja Tandon, MD, a childhood health researcher with Seattle Children’s Research Institute and a pediatrician, encourages children and families to get out, no matter the weather.

Outdoor winter playA recent study led by Tandon found that nearly half of U.S. preschoolers did not have even one parent-supervised outdoor play opportunity per day. The study also found that girls are less likely to play outside than boys and that mothers took their children outside to play more often than fathers. Fifteen percent of mothers and 30 percent of fathers did not take their child outside to walk or play even a few times per week.

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Breaking the silence after stillbirth – One family’s story

This Thursday, Jan. 31, is our daughter Emily’s 10th birthday, a time that should be filled playfully gathering with friends and giddily unwrapping presents. But Emily will never experience any of those things – she was born still.

Stillbirth is an all-too-common tragedy. In the U.S., 26,000 babies are stillborn every year – that is one baby, one family, every 21 minutes.

We were so excited to be pregnant with our first child, we never considered the possibility of a stillbirth—it was the only chapter in our pregnancy book that we skipped.

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