On the Pulse

Finding Myself at Seattle Children’s

Amna and her family moved to Seattle to get the best treatment possible for her daughter Jude, who has sickle cell disease. This is Amna’s story in her own words. 

I will never forget the moment I learned I was pregnant with my daughter, Jude. I had moved from Sudan to join my husband, Amar, in the United States the year before. In my culture, we have big families with lots of kids, and Amar and I wanted to start our own family right away.

It took a long time for me to get pregnant, but when I finally did, I felt like I was flying! I named my baby Jude that day. In Arabic, it means “the gift.” She was my gift from God.

Back then, I never imagined my baby’s life would be at risk before she reached her first birthday.

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The Race to Save Sirish’s Brain

A smiling family of two parents and three children posing for the camera with a white background.

Sirish, pictured in the top row on the left with his family, unexpectedly began developing seizures at age 11. Learn how teams at Seattle Children’s helped to protect his brain.

Sirish was a healthy, happy boy with no underlying medical conditions aside from food allergies and eczema, both of which were easily managed at home.

Then one day, he spiked a fever.

Initially, his mother, Jyothi, a physician who previously practiced in India, wasn’t concerned. The fever broke, and Sirish seemed to improve.

About a week later, though, he spiked another fever. This time, medication didn’t help. Then, the unimaginable happened: he had a seizure.

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The Most Comprehensive Fetal Care and Treatment Center in the Pacific Northwest

Dr. Rebecca Stark

Seattle Children’s and University of Washington Medicine launched a new program in October 2021 to provide the next generation of fetal care for families around the Northwest and beyond. The two hospitals offer the only fetal intervention and surgery program in the Pacific Northwest. Care will be provided at Seattle Children’s Fetal Care and Treatment Center and UW Medical Center. Dr. Rebecca Stark, co-directs the Maternal Fetal Intervention and Surgery Program with  Dr. Martin Walker, and Dr. Bettina Paek.

Dr. Stark, who is also the director of the Congenital Diaphragmatic Hernia program, spoke with On the Pulse about the new Fetal Care and Treatment Center and exciting additions to the center’s services. Read full post »


Adjustable Heart Stent Promises Lifelong Solution for Infants with Congenital Heart Disease

The Renata Minima Stent can be gradually expanded up to adult size over the course of the child’s lifetime

As Director of Cardiac Catherization Labs at Seattle Children’s, Dr. Brian Morray routinely performs diagnostic as well as complex heart procedures on patients as young as a few days old all the way up to adults. Part of his job is to provide minimally invasive services for children with congenital heart disease (CHD).

“Congenital heart disease is the most common kind of congenital birth defect,” said Morray. “For the vast majority of our patients, it occurs when the heart is developing in utero. It’s a structural abnormality of the heart that we frequently diagnose before birth.”


On Black Futures Month, a Race Against Sickle Cell and a Chance for Healing

A woman smiling and looking at the camera

Sarita Wall is the vice chair of the Black and African Heritage Network

Sarita Wall started working at Seattle Children’s in summer 2019, and she knew immediately that she wanted to volunteer at her new organization to get involved with her new work community.

“I wanted to do something meaningful and be around people who share some of the same experiences and who look like me,” said Wall, who is an executive assistant at the Neurosciences Center.

She joined the Black and African Heritage Network and met the leaders of that inclusion network, or employee resource group, including Shakema Magee, the chair of the group. Wall said BAHN was “very involved in the Black community within Seattle Children’s,” which she appreciated.

Wall is now the vice chair of BAHN. Among other activities, BAHN coordinates the Annual Walk Run for Sickle Cell, which raises awareness and educates people about the disease. It also helps create a sense of community around sickle cell. The event was canceled for the last two years due to the COVID-19 pandemic.

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A Low-Cost Device That Could Help Hundreds of Thousands of Preterm Babies in Low-Income Countries Breathe and Survive

A doll with medical tubes going into its nose.

The low-cost bCPAP device combines room air with oxygen and delivers it to the baby’s nose. The tubing carrying the oxygen ends submerged in water, which creates the pressures in the system and makes bubbles when the air comes out. The bubbles create a vibration that helps to keep the lungs open and working better. (Photo: PATH)

Each year, hundreds of thousands of babies born prematurely in low- and middle-income countries die because medical facilities there cannot afford the equipment that could help babies survive those crucial first few weeks after birth.

Many of these deaths are caused by respiratory distress syndrome.

In sub-Saharan Africa alone, some 6 million preterm babies are born every year with immature lungs. Their lungs aren’t fully developed, and they have trouble staying inflated, so they collapse. While medical institutions in high-income countries have bubble continuous positive airway pressure machines to help them breathe, those bCPAP units cost thousands of dollars—making them prohibitively expensive for many low-income nations. Of those 6 million babies, 800,000 of them are born at mid-level facilities that require bCPAP devices but likely don’t have them.

The bCPAP devices keep the lungs from deflating and also deliver blended oxygen into them—a critical step because breathing 100% oxygen can cause blindness in premature babies.

Medical providers in some low-resource countries use improvised bCPAP kits assembled from parts they already have in their clinics and use them to help preterm babies survive. However, these kits do not have the ability to provide blended oxygen for babies.

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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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