Patient Stories

All Articles in the Category ‘Patient Stories’

The Comfort of a Diagnosis and Knowing You Are Not Alone

Emmy Anderson and her daughter Wren sharing a happy moment

When your child is sick with a rare condition that can’t be named, the search for an answer can seem frustrating and hopeless. For Kirk and Emmy Anderson, navigating the lengthy diagnostic process for their daughter, Wren, was something they endured with the hope that an answer would eventually come.

By about 6 months of age, Kirk and Emmy noticed that Wren was not meeting her developmental milestones. After a febrile seizure led to a stay in in Seattle Children’s Neonatal Intensive Care Unit (NICU), they received the news that a brain MRI showed Wren had a decrease in the amount of white matter in the brain, as well as a fluid filled sack growing between her brain and spinal cord. Despite the findings, doctors didn’t yet know what was causing these issues to arise.

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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 »

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 »

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 »

New Use of Old Surgical Tool Transforms Brooklyn’s Life

Brooklyn Clasby, now 10 years old, received a Potts shunt at the age of 8.

In February 2010, Jennica Clasby knew something was wrong when her 3-year-old daughter, Brooklyn, said she needed to sit down because her “heart hurt.”

“I thought it was really odd to hear that coming from a 3-year-old,” Clasby said. “I sat her down on my lap, put my hand over her heart and I was terrified to feel that it was practically pounding out of her chest.”

Clasby and her husband Brandon, who lived in Colorado, rushed Brooklyn to the emergency room where they were shocked to learn she was in heart failure. Brooklyn was diagnosed with pulmonary hypertension (PH), or high blood pressure in the lungs. PH is a chronic condition that occurs when the muscle in the wall of the blood vessels and arteries in the lungs thickens and cannot properly expand to receive blood coming from the heart. This causes resistance to the heart, which then works harder to pump the blue blood in need of oxygenation into the lungs. Over time, the strain on the heart can cause it to fail.

“Our world was turned upside down,” Clasby said. “It’s incredibly hard to hear that your daughter has an incurable, lifelong disease that will progressively get worse. It changed the way we lived and gave us a new appreciation for life.”

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How a Genetic Discovery Could Explain Parker’s Mysterious Medical Case

The right side of Parker Walsh’s body and brain are bigger than the left. Doctors at Seattle Children’s Research Institute are studying a genetic mutation that could point to a cause for his condition.

When Parker Walsh flashes his toothy smile, he can get everyone around him grinning as well. That smile has pulled Parker, 21, and his family through a lot of tough times.

Parker was born with a host of medical issues that have impacted his development—a craniofacial abnormality, gastrointestinal issues, neurological delays and speech difficulty. Doctors could not pinpoint a specific cause for his conditions, and offered the best treatments available based on their diagnoses.

Now, doctors at Seattle Children’s Research Institute studying a gene that controls cellular growth have provided clues for what might have contributed to some of Parker’s medical issues, and the information could lead to improved diagnosis and therapies for babies and kids that share Parker’s experience. Read full post »

Celebrating a Decade of Pediatric Research: Patients and Families Share Stories

What if your child could help unlock a mysterious diagnosis or test a new treatment?

Each year, hundreds of patients participate in research studies conducted by Seattle Children’s Research Institute. Although the focus of the studies varies broadly, they all have one common goal: creating a better future for generations of children.

This year, the research institute celebrated its 10th anniversary. In just one decade, the research team has grown from 40 people to more than 1,500 faculty and staff members conducting groundbreaking research in state-of-the-art labs in three downtown Seattle buildings.

To commemorate this milestone, we interviewed young people and their families who have propelled research on concussions, asthma, Kawasaki disease and other conditions our researchers work on every day. Thanks to the families and young people who contribute to research, Seattle Children’s can improve treatment and care for children’s illnesses around the globe.

Top 6 Seattle Children’s Blogs of 2016

Bowen Warren, 3, was in the top blog post from 2016. Bowen was born with three heart defects and was brought to Seattle Children’s for emergency surgery.

Every day, extraordinary patients visit Seattle Children’s Hospital and researchers work toward medical breakthroughs at Seattle Children’s Research Institute. From scientific discoveries that make you say ‘wow’ to resilient patients who make you say ‘aww,’ these six blog posts from 2016 struck a chord with readers and were the most popular stories from the year.

1. Born With Three Heart Defects, Bowen is Now Thriving As He Approaches His Third Birthday

The top blog post in 2016 featured Bowen Warren, who was rushed to Seattle Children’s for emergency heart surgery when he was born with three heart defects.

The Heart Center team developed a personalized treatment course for Bowen that included cardiac magnetic resonance imaging, echocardiography and creating a 3-D replica of Bowen’s heart that allowed surgeons to ‘practice’ a complex procedure called a Nikaidoh before getting him in the operating room. Today, Bowen is a happy, healthy and thriving 3-year-old. Read full post »

Seahawks Bring Joy to 12s Big and Small at Seattle Children’s

richard-sherman-with-reef

Reef, 16 months old, poses for a photo with Richard Sherman.

Blue Tuesday at Seattle Children’s was a little more spirited today thanks to a special visit from the Seattle Seahawks players and members of the Sea Gals. Patients and families were all smiles as they got to meet their favorite football players during the team’s annual Captain’s Blitz visit.

“It was so exciting,” said Joanna Gromadzki. Gromadzki’s 16-month-old son, Reef Gromadzki-Johnson, has been a patient since he was 2 months old after he was diagnosed with pulmonary vein stenosis. “Seattle Children’s is like a second home to us, we’ve been here for so long. Today was special. We’re huge fans of the Seahawks!”

The Seahawks visit really brightened the day for Reef and other 12s in the hospital, and brought holiday cheer to some young and loyal fans. Read full post »