On the Pulse

Girl Born With Liver Outside Body Thrives as a Champion Gymnast

Kendall Stark was born with giant omphalocele, a condition where her liver protruded from her body. Now at 14 years old, she is a champion gymnast.

At 14 years old, Kendall Stark’s athleticism shines through her gymnastics medals and trophies that sit proudly on her shelf.

Glancing at this display, it might be hard to believe that the same young girl, who can bend, flip and dismount off the uneven bars eight feet from the ground, was born with a condition where her liver protruded from her body.

Kendall’s mother, Kyra Stark, was just 24 weeks pregnant when she was told by a doctor in her hometown of Billings, Montana, that her baby would be born with a condition called giant omphalocele.

Omphalocele is a type of abdominal wall defect where the intestines or other organs grow outside of the baby’s body and is covered by the layers of the umbilical cord, which forms a sac around them. It can vary in size and babies born with giant omphalocele face the risk of lung disease caused by organs squeezing against the lungs.

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Diagnosing Celiac Disease: Is It a Stomach Ache or Something More?

Today, Kyla Greenstein is an active 13-year-old girl who loves to skiing, among other sports.

From the time Kyla Greenstein was born, something wasn’t quite right with her digestion system. Kyla suffered from chronic diarrhea and bloating, and although she seemed to be an otherwise healthy child, it was concerning for her parents. It wasn’t until a well child check at the age of 5 when the family learned about an unexpected theory for their daughter’s tummy woes.

“On a day-to-day basis she was a happy child,” said Cindy Greenstein, Kyla’s mother. “But occasionally she would bloat and her stomach would be painful to the touch. We knew something was going on, just not what exactly.”

Her doctor recommended she be checked for celiac disease, and so the family was referred to Seattle Children’s where the diagnosis was confirmed.

Celiac disease is an autoimmune disorder. When someone with celiac disease eats gluten, a protein found in wheat and rye, it causes an immune system reaction and stimulates the body to attack the small intestine.

“Celiac is really common, occurring in about 1 in 100 people,” said Dr. Dale Lee, a gastroenterologist at Seattle Children’s and director of Seattle Children’s Celiac Disease Program. “It’s tricky because the presentation of celiac can be different for everyone. The symptoms of celiac can be quite variable, and so many people go undiagnosed.” Read full post »

Small Innovation Helps Train the Next Generation of African Cleft Surgeons

Cleft lip and cleft palate occur when part of the lip or roof of the mouth (palate) does not form properly.

When Dr. Richard Hopper, surgical director of Seattle Children’s Craniofacial Center, and his team of experts identify a problem, they won’t stop thinking about ways to solve it. Such was the case when they invented a device to help teach doctors in Africa how to perform cleft lip and palate surgery.

Cleft lip and cleft palate are birth defects that occur when part of a child’s lip or roof of the mouth don’t form properly, leaving a gap, or cleft. Cleft lip and palate are some of the most common birth defects in the U.S., occurring in about one in 4,000 babies. In Africa, the statistics are similar; however, the lack of medical care and shortage of surgeons to repair the birth defects can cause a cascade of problems for newborns, including malnutrition, social isolation and premature death.

Solving a problem through innovation

“When I visited Ghana for the first time, we found one of the greatest needs was in engaging and training more African doctors to perform the cleft lip and palate surgery,” said Hopper. “It’s a very technical surgery and you need a lot of education before you can do it safely.” Read full post »

Raising the Bar

Rini Olson, now 5, was dying in a Chinese hospital when she was adopted by Andrea and Eric Olson and brought home to the United States with hopes for a heart transplant. Dr. Erin Albers (left) and transplant nurse coordinator Pam Hopkins are part of the team that guides Rini and her parents through the follow-up care that keeps her new heart healthy.

When Andrea and Eric Olson adopted their daughter, Rini, from China, she was 22 months old and needed a heart transplant. But pediatric heart centers across the United States told the Olsons, who live in Salem, Ore., that Rini was too malnourished to endure the operation.

“We got ready to say goodbye,” Andrea Olson remembers. “Then Seattle Children’s called and said they would consider Rini for a transplant. I couldn’t stop crying — I could tell from Rini’s eyes that she didn’t want to give up.”

Families travel from around the world to Seattle Children’s Heart Center because, like the Olsons, they’ve been told their child is too medically complicated or too fragile to survive a transplant. Seattle Children’s is using innovative approaches to expand the boundaries of heart transplants and give these families hope. The center’s survival rates are among the nation’s best — more than 92% of patients live for more than three years after heart transplants.

“Sometimes you have to try something new or a child is going to die,” says Dr. Michael McMullan, who directs the transplant surgery program. “Those kids deserve a chance to live, and we believe we have the expertise and experience to be successful even when we’re doing something that hasn’t been done before.” Read full post »

Patient Families SHIFT to Peer Advisors as Weight Management Treatment Study Progresses

Heather Armstrong and her daughter, Lauren, saw positive results from their time in the SHIFT study last year. Armstrong is now a SHIFT peer interventionist helping other families.

Heather Armstrong made a commitment to a healthier lifestyle when she volunteered herself and her 8-year-old daughter, Lauren, for a weight management treatment study at Seattle Children’s Research Institute.

For five months, Armstrong and Lauren attended weekly sessions in the Success in Health: Impacting Families Together (SHIFT) study that provided guidance and education to help them reach and sustain better eating and activity behaviors and ultimately better weight management. The sessions focused on healthy eating, supporting children throughout behavior changes, improving the home environment for physical activity and healthy eating, building confidence and incorporating more physical activity into family life. Read full post »

Sneaky Sodium is Hard on the Heart

Nearly 90% of kids in the U.S. consume too much sodium, putting them at risk for high blood pressure in childhood, and heart disease and stroke later in life. While everyone needs a small amount of sodium to help control the fluid balance in the body and allow nerves and muscles work, too much sodium is harmful and is dubbed the ‘silent killer.’

In honor of American Heart Month, On the Pulse asked Kirsten Thompson, a dietitian in Seattle Children’s Pediatric Hypertension program, to provide insight into how kids are consuming so much sodium.

“When I ask patients and families about sodium intake, they often say that they don’t eat too much sodium because they don’t add salt from the salt shaker to the foods they eat,” said Thompson. “They’re often surprised to learn that sodium is actually hidden in a lot of foods that we wouldn’t normally think of as salty.” Read full post »

HIV Immunotherapy Study Shows T-Cells Can Kill, Resist HIV Simultaneously

Seattle Children’s researchers developed a T cell that can both kill and resist HIV. On the left is a microscopic image of thousands of HIV-infected cells after being exposed to normal, unedited T cells. On the right is a microscopic image of HIV-infected cells after being exposed to edited T cells. The clumping in the image to the right indicates HIV positive cells are being killed by the edited T cells.

HIV is a cunning virus—it infects, takes over and shuts down the body’s T-cells that fight infection. This leaves HIV-positive individuals without immune power to fight off many types of infections, even a common cold, which can become deadly.

Researchers at Seattle Children’s Research Institute published two studies in the journal Molecular Therapy that could lead to a more permanent treatment that uses the power of the immune system to fight off disease. With the use of gene editing, they developed a T-cell that can both kill and resist HIV simultaneously, a promising step forward in the development of HIV immunotherapy.

“Our goal is to develop an HIV treatment that is more permanent than a daily drug,” said Dr. David Rawlings, director of the Center for Immunity and Immunotherapy at Seattle Children’s Research Institute. “In the future we hope this treatment would eliminate the need for HIV drugs that have negative side effects on people who need them to stay alive.” Read full post »

Tiny Hearts, Faster Healing: Seattle and Indonesian Cardiologists’ Easy Fix Improves Heart Surgery Recovery in Babies

A pediatric heart surgery patient at the National Cardiovascular Center hospital in Jakarta, Indonesia. Researchers found giving babies thyroid hormone during and after heart surgery got them off ventilators faster.

Babies who need heart surgery in the U.S. have access to advanced healthcare and doctors that get them into the operating room quickly, allowing them to fix problems early and give the babies a chance at healthy growth.

But in developing countries, babies wait longer for surgery for a variety of reasons: Fewer qualified doctors, late diagnoses of heart conditions, and capacity issues at hospitals that cannot accommodate all the infants who need surgery. As a result, babies with heart conditions in developing regions of the world are often sicker and weaker when they finally have surgery.

Dr. Eva Marwali, a pediatric cardiac intensivist at the National Cardiovascular Center Harapan Kita in Jakarta, Indonesia sees this happen to babies in her country. She teamed up with Dr. Michael Portman, a cardiologist at Seattle Children’s Research Institute, and in a study out in the Annals of Thoracic surgery, they identified an easy, economical way to speed recovery for babies at her hospital who need lifesaving heart surgery. Read full post »

Dr. Ben Danielson Honored for an Innovative Approach to Caring for Children

Danielson was recognized by the Simms/Mann Institute as a recipient of the 2017 Whole Child Award.

Today, Dr. Ben Danielson, senior medical director of Seattle Children’s Odessa Brown Children’s Clinic (OBCC), was honored by the Simms/Mann Institute as a recipient of the Whole Child Award, a national recognition that honors extraordinary leaders in medicine and education. Launched in 2015, the Whole Child Award is given to individuals who are focused on a whole child approach to caring for children and their families.

On the Pulse sat down with Danielson to talk about this achievement and how OBCC, a community clinic located in Seattle’s Central District that provides medical, dental, mental health and nutrition services to families, approaches caring for the whole child. Read full post »

A Mother’s Intuition Leads to Picture-Perfect Treatment of Eye Cancer

The abnormality in Julia De Vos’ left eye was later identified as retinoblastoma. Julia’s mother, Amanda De Vos, took the photo and was quick to alert the family pediatrician when she noticed the white dot.

Some pictures are worth much more than a thousand words.

Like the picture Amanda De Vos took of her daughter Julia, which helped to identify retinoblastoma, a rare eye cancer that was stopped in its tracks with an innovative treatment at Seattle Children’s.

De Vos, a professional photographer, was reviewing shots she took of her 15-month-old identical twin daughters, Julia and Jemma, when a photo of Julia caught her attention. The image shows an excited toddler in dinosaur pajamas, her open mouth featuring three new bottom teeth.

An off-white glow in Julia’s left eye gave De Vos pause. It was an abnormality De Vos hadn’t seen previously in any of the thousands of pictures she had taken. The pupil in Julia’s right eye had a red dot in it—a common photographic nuisance that results when light from a camera flash reflects off the retina in the back of the eye. Read full post »