On the Pulse

Seattle Children’s Congenital Adrenal Hyperplasia Program Helps a Family Find a Medical Home

A boy in the foreground and a girl both with wide smiles standing in a yard and wearing backpacks.

Rebecca and Samuele Ciccu were diagnosed with CAH shortly after birth.

Arianna Ciccu and her husband, Marco, knew if they had children, they might be born with congenital adrenal hyperplasia (CAH). It’s a genetic condition Marco was born with and has navigated his whole life.

CAH is a group of conditions that affects a person’s adrenal glands. Congenital means the condition is present at birth, and hyperplasia means the glands are overgrown. The adrenal glands make and release the hormone cortisol, which plays a key role in how the body uses sugar for energy and how it deals with stress. A person with CAH can’t make enough cortisol because they are missing an enzyme. There are two different types of CAH, classical and nonclassical. Classical CAH is more severe and can be life-threatening.

When Arianna and her husband welcomed their first child, Rebecca, the first thing they asked the doctor was if Rebecca had CAH. Today, all babies are screened for CAH at birth using a simple blood test. Without treatment, newborns with CAH can develop serious symptoms, including weight loss, vomiting, dehydration, diarrhea, shock, heart rhythm problems and death.

The test was positive.

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Differences in Sex Development Require Multidisciplinary, Compassionate Care

A woman with dark hair to her shoulders smiling and wearing a necklace.

Dr. Patricia Fechner is the Medical Director of the Differences in Sex Development Program at Seattle Children’s

A difference in sex development (DSD) is a mismatch between a child’s chromosomes or genetic material and the appearance of the child’s genitalia. DSDs can appear at any age – prenatally, during infancy, during childhood or even during adolescence. The majority of DSD patients are seen after birth because they present with atypical genitalia and need care from specialists in many different fields.

In this Q&A, Dr. Patricia Fechner, medical director of the Differences in Sex Development Program at Seattle Children’s, outlines one of the largest and most comprehensive DSD teams in the nation dedicated to compassionate care for our patients with DSD and their families.

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The Brain-Gut Connection: Dr. Person’s Unique Expertise Addresses Children with Chronic Gastrointestinal Issues

A lightly bearded man smiling and wearing a tie.

Dr. Hannibal Person is the newest addition to Seattle Children’s Gastroenterology and Hepatology team.

Seattle Children’s is excited to welcome Dr. Hannibal Person to the Gastroenterology and Hepatology team. Dr. Person brings a unique triad of general psychiatry, child and adolescent psychiatry, and pediatric gastroenterology expertise to Seattle Children’s. He is looking forward to building an interdisciplinary program to help children who suffer from chronic gastrointestinal symptoms like nausea, vomiting, diarrhea, constipation and pain. His goal is to create a supportive program focused on the brain-gut connection — a true one-of-a-kind program in the U.S.

We sat down with Dr. Person to learn more about his background and his vision for the future.

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Some Doctors Wear White Coats, Others Wear Tiaras – Dr. Klane White Is Comfortable in Both

 

A man wearing a doctor's white coat and a tiara smiling and looking at a toddler, who is looking back at the man.

Dr. Klane White is an international leader and advocate for children like Emma with rare skeletal health conditions. As the parent of a child who had a complex medical condition, he knows what it feels like to be on the receiving side of a difficult medical diagnosis and care –– and it’s helped shape him into the incredible provider, researcher and surgeon he is today.

Dr. Klane White leads the Skeletal Health and Dysplasia Program at Seattle Children’s. He is an international expert in the care of children with mucopolysaccharidosis (MPS) and skeletal dysplasia, lecturing around the globe on the orthopedic management of these conditions. In addition to being the only pediatric orthopedic surgeon in the world to serve as principal investigator on phase 3 clinical trials for rare skeletal conditions, he serves on the medical advisory board of Little People of America, the scientific advisory board of the National MPS Society and is an executive founding member of the Skeletal Dysplasia Management Consortium. This story is one example of the compassionate care he and other members of Seattle Children’s Orthopedics and Sports Medicine Program provide to children every day.

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Cutting-Edge Clinical Trials for Alagille Syndrome Help Families Find Relief from Rare Condition

A woman leaning down holding a young girl on a path in a park.

Amanda and her daughter, Amelia, have both been treated at Seattle Children’s for Alagille syndrome.

When Amanda Thorlacius found out she was pregnant with a little girl, she was overjoyed. But she wondered if her daughter would inherit the same genetic condition that robbed her of a normal childhood.

“Give me all the diseases in the world, but don’t give Alagille syndrome to my children,” Amanda said.

Alagille syndrome (ALGS) is a rare, inherited condition in which children may have too few bile ducts in the liver. This causes problems with the way bile moves and makes it hard for the body to remove toxins.

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Seattle Children’s Welcomes Dr. Mignon Loh to Lead Cancer and Blood Disorders Care and Research

Last year, if you had told Dr. Mignon Loh that she would soon become the leader of cancer care and research at Seattle Children’s, no one would have been more surprised than her. As chief of pediatric oncology at the University of California, San Francisco Benioff Children’s Hospitals, she was caring for children with cancer and leading breakthrough research at one of the world’s most renowned medical institutions. Then Seattle Children’s contacted her and outlined our vision – and we were thrilled that it immediately caught her attention.

“I wasn’t looking to leave UCSF, but I was intrigued because Seattle Children’s was thinking big,” Loh said. “They were committed to building innovative facilities to augment their research footprint, they wanted to reimagine wet and dry bench research as part of their alliance with the Fred Hutchinson Cancer Research Center and the University of Washington, and they were clearly on a mission to improve cancer and blood diseases care for children worldwide. The opportunity was too good to pass up.”

We’re ecstatic that Loh joined Seattle Children’s in December, and is leading the Cancer and Blood Disorders Center and directing the Ben Towne Center for Childhood Cancer Research at Seattle Children’s Research Institute. She is also division chief of Pediatric Hematology, Oncology, Bone Marrow Transplant and Cellular Therapy at the University of Washington School of Medicine and heads the Section of Pediatric Oncology at Fred Hutch.

“Seattle Children’s has an amazing history, and their immunotherapy work is groundbreaking,” Loh said. “I’m excited to build on that and make an even bigger difference for the kids who are afflicted with blood diseases and cancers who need better treatments and cures.” Read full post »


Using Art and Music Therapy to Promote Physical and Mental Health

Screen shot of a woman with long hair on the left and a painting on the right.

This wintry snow illustration was designed by Helena in a “Dessert and Draw” virtual evening group designed for cancer care teen patients and siblings, 13-years-old and older. The purpose of the Zoom sessions is to present a theme to participants once a month and bring together teen siblings, who may live anywhere in the country.

As part of the Child Life Department, art and music therapy at Seattle Children’s introduces different techniques to promote patients’ physical and mental health, either at patients’ bedside to assist in the art-making process or virtually in smaller groups and one-to-one sessions.

Through a variety of creative materials and techniques, which can include drawing, painting, clay and collage, patients learn about their relationship with art with support from art therapists to help them express themselves, process emotions and connect with loved ones from afar.

Seattle Children’s art therapist, Helena Hillinga Haas, leads many of these individual and virtual group sessions and explains how the process can help develop autonomy, strength and resilience for children and teenagers coping with symptoms, anxiety and traumatic experiences. Read full post »


Seattle Children’s Announces New Leadership for Odessa Brown Children’s Clinic

A smiling woman sitting on a chair the right gives a high-five to a happy young child as another smiling child wearing glasses looks at them.

Dr. Shaquita Bell has been caring for families at OBCC for nearly 16 years.

Seattle Children’s has appointed Dr. Shaquita Bell as senior medical director of Odesa Brown Children’s Clinic in south Seattle, where she has served for nearly 16 years. The organization also named Dr. Kenisha Campbell as medical director at the clinic.

Bell will lead OBCC in the Central District and the new clinic at Othello Square, which is slated to open in March. Both doctors will have roles at the two locations.

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Helping Children Sleep: Seattle Children’s Expanding Sleep Medicine Program

A child in a bed with a medical professional standing to the left and another person sitting on a couch in the background.

One of the 12 overnight sleep study suites at Seattle Children’s new Sleep Center

Studies consistently show that up to 50% of children experience a sleep problem at least a few nights each week. While the most recognized consequence of inadequate sleep is daytime sleepiness, children commonly manifest their sleepiness as irritability, behavioral problems, learning difficulties and poor academic performance.

Some sleep disruptions are normal and are connected to age-related changes. Others are symptoms of an actual sleep disorder. Whatever the reason, sleep problems can affect the entire family and should be accurately diagnosed.

In this Q&A, Dr. Maida Chen, director of Seattle Children’s Pediatric Sleep Disorders Center and associate professor of pediatrics at the University of Washington, shares details on Seattle Children’s expanding Sleep Medicine Program.

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Dr. Maneesh Batra, New Interim Neonatology Chief, Aims to Improve Access to Care for Babies Everywhere

A man with a beard, smiling and wearing glasses with green vegetation in the background.

Dr. Maneesh Batra’s experience with babies in low-resource countries fed his passion to focus on neonatal care and public health.

Dr. Maneesh Batra, the new interim chief of neonatology at Seattle Children’s, first became interested in neonatology when he was working as a resident in Ugandan hospitals in 2002. He witnessed the incredible sorrow on the faces of mothers whose babies were failing to thrive.

“It was striking to me how much the providers and the families wanted to give those babies hope,” Batra said. “The moms were bringing their babies there to give them a chance at survival, and most of them were dying. It felt really wrong and unfair.”

When Batra returned to the U.S., he found it hard to shake those images from his mind. It ultimately led him to converge two of his interests — neonatal care and global health — with the mission of helping improve access to care for all babies everywhere.

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