Patient Care

This is a special guest post from JoNel Aleccia, staff writer at Fred Hutchinson Cancer Research Center. See the original article and photos here.

Rachel Dixon holds her son Ezra, who was born with SCID. Nearly two months after having a life-saving bone marrow transplant from his brother, he’s doing well. Photo courtesy of Bo Jungmayer / Fred Hutch News Service

Ezra Dixon was born April 7, four months after the state of Washington first starting screening newborns for the disorder commonly known as “bubble boy disease,” which leaves its patients at the mercy of common germs.

Some 22,610 babies were tested before him and more than 28,000 have been tested since, all negative, health records show. But Ezra is different.

The bald, blue-eyed boy is the only child in the state so far diagnosed with severe combined immunodeficiency, or SCID, detected through the program.

When staff at the Washington State Department of Health Newborn Screening Lab analyzed the drop of blood pricked from his heel shortly after birth, they found none of the T-cells that protect the body from infection, a certain sign of the rare disorder.

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Complications that can arise around the time of birth may reduce oxygen and blood flow to a baby’s brain, causing hypoxic-ischemic encephalopathy (HIE), a leading cause of death or neurological impairment among infants. In the past eight years, cooling therapy (hypothermia) has become the standard form of care for HIE, as it’s been found to be effective in reducing brain injury, but doctors say it’s not enough – about half of affected infants still have a poor outcome.

For this reason, researchers have launched a nationwide study, called the Neonatal Erythropoietin and Therapeutic Hypothermia Outcomes in Newborn Brain Injury (NEAT-O), to see if using the hormone erythropoietin (Epo) in conjunction with cooling therapy may further reduce the risk of neurologic deficits in full-term infants (at least 36 weeks gestation) with HIE.

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Dr. Ghassan Wahbeh, right, diagnosed Paige Norris, now 14, with Crohn’s disease three years ago.

Paige Norris’s young life seemed to be sailing along with fair winds and sunny skies. At 10 years old she was an enthusiastic tennis player with lots of friends and a stellar academic life – two years ahead in every subject.

But sometime in fourth grade her internal weather shifted, and she developed debilitating abdominal pain.

Her parents felt helpless as doctors downplayed Paige’s symptoms. “It was so frustrating to hear condescending advice like, ‘kids have stomach issues; she’ll get over it,’” recalls Deborah Norris. “But I know my daughter, and she’s not a complainer.”

Paige’s condition worsened as mysterious bouts of vomiting and diarrhea sapped her energy. She stopped growing, lost 20 pounds, and had to quit her favorite sport.

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The sun was bright when Lyla Conrad and her father arrived early for softball practice to catch a few pop flies. Lyla, 9 at the time, had caught hundreds before, but that day she lost one in the sun. It fell straight down into her eye. Almost immediately, her eye was swollen and she felt incredibly nauseous.

“We thought she had a concussion,” said Sari-Kim Conrad, Lyla’s mother. “We never thought a softball could do so much damage.”

After receiving an initial check-up at a local emergency room, she was transported by ambulance to another area hospital for further tests. The diagnosis: an orbital “trapdoor” fracture. Lyla would need surgery, and soon. Read full post »

Dr. Douglas Hawkins is the chair of the COG study

At the American Society of Clinical Oncology (ASCO) Annual Meeting, Children’s Oncology Group (COG) researchers presented promising findings from an international study that has identified a new therapy for treating rhabdomyosarcoma, a common childhood cancer. The therapy has fewer harsh side effects, meaning it lessens the chance of infections, need for blood transfusions and infertility later in life.

“Although we did not improve the cure rate, we are excited that we have identified a therapy that was as effective as standard treatment, but has fewer harmful side effects,” said Dr. Douglas Hawkins, chair of the COG study and associate division chief of Hematology/Oncology at Seattle Children’s Hospital. “Most children are cured of this cancer, and so we want to limit not only the side effects they experience during treatment, but also reduce the side effects that affect long-term health.”

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Baby Molly Hamilton.

Meet Molly

On Feb. 17, 2008, Erin and Bill Hamilton welcomed their daughter Molly into the world. She appeared to be a perfectly healthy, 9-pound baby girl, but a newborn screening test revealed Molly had cystic fibrosis.

“We were devastated,” Erin said. “We didn’t know anything about cystic fibrosis and had no idea how this disease would affect her life.”

Life-changing research

Cystic fibrosis is an inherited condition that affects about 30,000 people in the United States. It causes thick, sticky mucus to build in the lungs, digestive tract and other areas of the body. It’s also a disease that has become the life’s work of Dr. Bonnie Ramsey, director of the Center for Clinical and Translational Research at Seattle Children’s Research Institute.

In 1938, when cystic fibrosis was first recognized as a disease, babies with this condition rarely lived past one year. Thanks to researchers like Ramsey, children with this disease can now live comfortably into adulthood.

“It is so rewarding to see how research impacts the lives of these children,” Ramsey said. “My goal is to keep conducting research studies until there are successful treatments for all patients with cystic fibrosis.” Read full post »

Social worker Yasha Carpentier (right) talks with a patient’s mom about the Patient Emergency Assistance Fund.

A patient arrived at Seattle Children’s Emergency Department by helicopter, alone and unconscious. As the Emergency Department team worked to resuscitate the boy who had nearly drowned, his parents drove several hours in stunned silence to the hospital, hoping their son would be alive when they got there. After receiving the good news that he would ultimately recover from the accident, they realized that they’d left their cell phone charger at home and had no way to contact family and friends.

It’s a common scenario for families, who often arrive at Seattle Children’s Hospital for lifesaving care with little more than the clothes on their backs.That’s where the Patient Emergency Assistance Fund, administered by Seattle Children’s Social Work Department, comes into play. The fund provides short-term help to families who are hours away from home with little money and few of the basic necessities of life.

Social worker Lynne Hakim calls the fund a safety net and says the basic necessities it purchases, like a simple cell phone charger, can be the bridge that helps a family cope with all the uncertainty and intensity inherent in an unplanned hospital stay.

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Each week, poets Ann Teplick and Sierra Nelson arm patients at Seattle Children’s Hospital with a notepad, pen and thought-provoking prompts to help them discover the power, and therapeutic nature, of the written word. Some patients use writing to share their story or process difficult emotions, while others use it to ignite their imagination and go to another place, remembering their life and who they are beyond the hospital walls.

“I approach children and teens by telling them they have important things to say, and that the world needs their stories,” said Teplick. “I ask them if they agree, and time and time again, they reply ‘Yes.’ I then invite them to write from the heart and share something about who they are as a person.”

Teplick and Nelson work with Seattle Children’s patients through the Seattle Arts and Lectures’ Writers in the Schools (WITS) program, which sends professional writers into schools to help students discover and develop their writing ability. About five years ago, WITS added Seattle Children’s as its only non-public school site.

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While many people with epilepsy live a full life, some die abruptly without warning or other clear medical cause due to a devastating phenomenon called sudden unexpected death in epilepsy (SUDEP). SUDEP is the most common cause of death in those with severe forms of epilepsy where seizures cannot be controlled with treatment, but what causes this tragic event remains unclear.

Franck Kalume, PhD, and other researchers at Seattle Children’s Research Institute are working to change this.

“Having a family member unexpectedly pass away from this – without any explantation as to why – is extremely devastating,” said Kalume, who lost his nephew to SUDEP. “Even though this condition has been around since the dawn of time, it is only in the recent decades that there’s been a substantial increased interest in SUDEP research and in raising awareness about its risk. I hope that we will be able to make a life changing impact by furthering our knowledge of the physiological mechanisms of SUDEP and finding ways to prevent it.”

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Meet Olivia Rickert and Michile Smith: Two generations apart, but linked forever by their special hands.

When Olivia Rickert was still in utero, an ultrasound at 20 weeks revealed that she had inherited a genetic mutation passed down from her mother and maternal grandmother. In Olivia’s case, the mutation was expressed as a cleft (split) hand. Though most kids born with this condition have no other health problems and can overcome their hand difference naturally or with surgery, Olivia’s mom (Stephanie Rickert) worried it might signal worse news. Stephanie had little outward sign of the mutation, but her mother, Michile Gormley Smith, was born with split hand/split foot absent long bone syndrome — claw-like hands and feet and legs missing tibia bones. (Smith was treated at Seattle Children’s starting in 1958 by pioneering orthopedist Dr. Ernest Burgess.)

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