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Toddler’s Heart Rebounds After ‘Frankenstein’ Heart Procedure

Katja, now 3, was the youngest patient at Seattle Children’s to undergo the Ozaki procedure.

Although Katarina Anja, or “Katja,” De Groot was born with a rare heart defect called truncus arteriosus, the active toddler never let her condition stop her from running, playing and going to the park.

However, when she was 2 years old, Katja began sleeping for most of the day and withdrawing from the activities she usually enjoyed. That was when her mother knew something was wrong.

“She wasn’t herself anymore,” said Jennifer De Groot. “My daughter is usually a happy-go-lucky child who loves to live life to the fullest. I didn’t know how much longer we could see her like that. It’s like we had reached the point of no return.”

De Groot’s concerns grew, and she knew she needed to seek help for her daughter. Dr. Maggie Likes, Katja’s cardiologist at Seattle Children’s, noticed a difference in her echocardiogram. It showed her aortic valve was not functioning properly.

“We had hit a tipping point,” Likes said. “Between the concerning changes on her echocardiogram and what her mom was seeing at home, it was time to do something about her aortic valve.”

De Groot knew her daughter wouldn’t be able to lead an active lifestyle with a mechanical valve because it would mean that Katja would have to undergo a lifelong regimen of anti-coagulants, commonly known as blood thinners. She made a bold move and asked the Seattle Children’s Heart Center team if they could perform an innovative surgical technique that would repair her daughter’s aortic valve – an unexpected suggestion that led to a collaborative decision.

At 2 years old, Katja would become the youngest child at Seattle Children’s to undergo the Ozaki procedure.

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Facial Surgery Helps Emma’s Confidence Soar

At Seattle Children’s, Emma received the correct diagnosis and treatment for her hemangioma.

Donna West remembers her daughter, Emma, being born with a mark on her face. Part of her right cheek was raised and dark purple, like a bruise. A dermatologist diagnosed the mark as a benign extravascular hemangioma, a term that is no longer used, and said not to be concerned. A hemangioma is a collection of extra blood vessels in the skin.

However, as years passed, the hemangioma grew larger and began to hurt. When Emma, now 11, would hang upside down in the playground, it would throb. If she coughed, the mark would get inflamed and shiny.

“When she would have a coughing spell from her asthma or a cold, the pain was like clockwork,” West said. “We were told it could go away, but that wasn’t happening.”

Until receiving care from Dr. Jonathan Perkins, clinic chief of vascular anomalies at Seattle Children’s, who performed surgery on Emma with the help of a new technique called facial nerve mapping, the family didn’t have an accurate diagnosis for the hemangioma or knowledge of treatment options. Read full post »

Reconstructive Pelvic Medicine Program Changes Brothers’ Lives

Brothers Zeke (left) and Isaiah (right) were both born with a rare condition. They received care from Seattle Children’s Reconstructive Pelvic Medicine Program.

Ezekiel, or “Zeke,” 7, and Isaiah, 5, had a life-threatening medical condition at birth. They were both adopted from China with anorectal malformations, which affect about 1 in every 5,000 babies. Babies born with these malformations have no opening at the end of the digestive tract where the anus normally is, requiring complex surgery.

After receiving emergency surgery in China, both received individualized follow-up treatments from Seattle Children’s Reconstructive Pelvic Medicine Program, which is the most comprehensive and experienced program of its kind in the Western U.S. The program brings together the knowledge and skills of experts from General Surgery, Gastroenterology, Motility, Gynecology, Urology, Radiology and Pathology.

“Seattle Children’s has been fantastic, and everyone that we have come across has been great,” said mother Robyn Ross. “Everyone even knew us by name, and they made the whole experience very easy to navigate.” Read full post »

Wilderness Safety Tips for Families

Dr. Douglas Diekema is passionate about the outdoors and wilderness safety. Here he is photographed with his son Nathan on top of Glacier Peak in the Cascade Range.

Like many Pacific Northwest residents, Dr. Douglas Diekema is an avid hiker, camper, climber and skier. His favorite trails near Seattle include Snow Lake, Mount Dickerman, Lake Serene, Perry Creek and Goat Lake.

But Diekema, an emergency medicine physician and director of education in the Treuman Katz Center for Pediatric Bioethics at Seattle Children’s, not only enjoys the great outdoors – he helps people learn how to stay safe while in the wilderness. His emergency medicine expertise, appreciation for the outdoors and interest in environmental exposure-related conditions intersect in his passion for wilderness safety. Read full post »

Lifesaving Experience Inspires Kindergartner to Donate Birthday Gifts

Hannah Mae Campbell, 6, received a lifesaving heart transplant at 4 months old. She recently donated her birthday presents to Seattle Children’s.

Last month, 6-year-old Hannah Mae Campbell wanted to invite her entire kindergarten class to her birthday party. However, Hannah decided that she couldn’t possibly keep all of the gifts herself; rather she told her mother that she wanted to give them to kids at Seattle Children’s.

She said she wanted to give kids something to play with that would help them “have fun” and “feel happy,” since being at the hospital can sometimes be sad. Surpassing her original goal of donating 20 gifts, Hannah and her family delivered 139 toys and books to the hospital. The activities included Lego sets, Play-Doh, My Little Pony, Hot Wheels, puzzles, coloring books, dolls, superheroes and stuffed animals.

“Everyone says she’s such an old soul who is always wanting to help others,” said Jennifer Campbell, Hannah’s mother. “A lot of it may have to do with growing up a little quicker in a hospital. Hannah has experienced things like blood transfusions and surgery that a lot of kids have never had to go through.”

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Seattle Children’s Reaches Beyond Its Walls to Improve Mental Health Care for Kids in the Community and Across the Region

There is a tremendous need for improved access to mental health care and resources for children and teens nationwide.

At Seattle Children’s, its commitment to helping address this need spans not only within the Seattle community, but throughout the region.

According to the U.S. Centers for Disease Control and Prevention, nearly 1 in 5 children have a mental, emotional, or behavioral disorder, such as anxiety or depression, attention-deficit/hyperactivity disorder, disruptive behavior disorder, and Tourette syndrome.

While early intervention is key in managing mental health issues, only about 20% of children with disorders receive care from a specialized mental health care provider.

That’s why Seattle Children’s is continuously working to enhance access to mental health services, promote education and research, and advocate for families affected by mental illness.

The following describes three of the many innovative programs and initiatives that Seattle Children’s offers to help improve mental health care for all children.

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