“We’re Not Just Transplanting Organs, We’re Transplanting Lives”

The Hurtados enrolled their children in the Studies in Pediatric Liver Transplant (SPLIT) database which follows children who receive a liver transplant in the U.S. or Canada. They hope researchers will use this information to help other families like theirs.

Having one child in need of a liver transplant can be tremendously challenging for a parent. Eugenia and Justino Hurtado have four.

All four of the Hurtado children were born with Maple Syrup Urine Disease (MSUD) — a rare genetic metabolic disorder in which the body is unable to break down certain parts of proteins due to an enzyme deficiency. The disease can lead to a buildup of toxic substances that cause organ and brain damage.

Adolescents and adults with MSUD are also at risk for attention deficit disorder, anxiety and depression. Infections, stress, surgeries and injuries can lead to neurological damage at any age.

People with MSUD get most of their nutrients from a prescribed liquid formula. They can eat some low-calorie foods but must be very careful. If they stray from the diet, they can experience muscle spasms, breathing failure, intellectual and developmental disabilities or even coma. Read full post »

The Gift of Time

A woman holding a toddler with a lake and a forest in the backgroundColleen and Derek spent the first half of Colleen’s pregnancy like many first-time parents, imagining what their child would be like, musing about things they would do as a family and celebrating a joyful new chapter in their lives.

They never imagined they would have a child with special needs or that doctors would predict their baby may not live past childhood. When that became Colleen and Derek’s reality, Seattle Children’s Uncompensated Care Fund gave them the gift they needed most — time with their daughter.

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Should Schools Require COVID-19 Vaccinations? An Ethics Expert Weighs In

A child wearing a face covering getting a vaccine.

Isaac was one of the first 5 – 11 age kids to get vaccinated at Seattle children’s

Since the start of the COVID-19 pandemic, people have been asking ethical questions about vaccinating children against the disease: Is it necessary to vaccinate children, who seem to experience the disease differently than adults? Should children in school be required to get the vaccine?

We spoke to Dr. Doug Diekema, an emergency medicine physician at Seattle Children’s and director of education in the Treuman Katz Center for Pediatric Bioethics, to discuss these and other questions about vaccinating kids against COVID-19. Read on to learn more.

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The Mission of a Lifetime: State to Use Dr. Sihoun Hahn’s Newborn Screening Test for Wilson Disease

Kaitlyn and Ryan Wyckoff travel from their hometown of Wasilla, Alaska, to Seattle Children’s so Dr. Sihoun Hahn (center) can monitor and treat them for Wilson disease — a rare genetic disorder.

 

The lifetime goal of Dr. Sihoun Hahn, director of the Wilson Disease Center of Excellence and investigator in Seattle Children’s Research Institute’s Center for Integrative Brain Research, is one step closer to being achieved.

After more than 30 years studying Wilson disease, Hahn’s newborn screening test for this rare genetic condition will be trialed in a pilot study by the Washington State Department of Health by the end of the year. If the study is successful, Hahn’s test could soon be used to diagnose infants across the country with this life-threatening, but easily treated, disease.

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How Hunger Helped Dawson Learn to Eat

Photo of a baby smiling with food on his bib.

Today, Dawson is a well-nourished and thriving 9-month-old who eats all his meals and takes all his medications by mouth. If he hadn’t participated on Children’s hunger-based tube weaning process, he might have been dependent on a feeding tube for a much longer time.

When a pregnant Heather Henson learned her baby, Dawson, had hypoplastic left heart syndrome — a rare and serious condition where the left side of the heart is not fully developed — she immediately began researching the disease and the hospitals that treat it.

Heather and her family live in Anchorage, Alaska. The state doesn’t have a pediatric hospital equipped to perform the heart surgeries Dawson would need to survive, so she had to give birth somewhere else.

During her research, Heather found an HLHS Facebook group where other parents shared their experiences with the disease. Stories of successful surgeries and thriving babies gave her hope, but she worried when she saw many children who relied on feeding tubes after their surgeries.

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Turning 3 and Cancer Free

There may be no better way for a 3-year-old to celebrate cancer remission than with a Frozen-themed birthday party. That’s exactly what Penny Hatch and her family did last weekend.

Penny was diagnosed with neuroblastoma, a solid-tumor cancer with a survival rate of about 50%, three months after her baby brother, William, was born with a life-threatening heart condition. Today, William is thriving at home and Penny is in remission.

Penny’s final immunotherapy treatment was on Sept. 2 after a year of treatments that included surgery, chemotherapy, a bone marrow transplant, radiation, and immunotherapy which stimulates the immune system to fight diseases.

Samantha, Penny’s mom, was overwhelmed with emotions when she squirted the final immunotherapy drug dose into her daughter’s mouth. “It felt like I was finally allowed to feel the weight of everything we’ve been through.”

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Scientists Search for the Cause of Their Son’s Epilepsy

The phone call came at 2 a.m. It was a neonatologist calling about Kimberly Aldinger and Scott Houghtaling’s son, Grayson. Kimberly had given birth to premature twins a month earlier and both babies were in the neonatal intensive care unit (NICU) at Swedish Hospital. The new parents had returned home to get a much-needed night of sleep when the doctor left a message on their voicemail.

Child boy in booster seat

Kimberly Aldinger and Scott Houghtaling’s son, Grayson (pictured here), began having seizures when he was just 24 days old. Now, his parents are using their scientific expertise to try to find the cause of his epilepsy.

“I’m really worried about Grayson,” the doctor said. “He’s having a massive seizure. You need to come down here.”

Scott immediately feared the worst. “I thought, the only reason they’d call in the middle of the night was if they were preparing for the worst outcome — Grayson not surviving.”

Thankfully, the medical team was able to stop Grayson’s seizure that night, but it was just the beginning of Kimberly and Scott’s journey to understand the severity of their son’s brain damage and how it would shape all their lives.

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“So Much to Be Thankful For”: A Year In the Life of the Hatch Family Part Two

Two weeks before their 3-month-old son was scheduled for his second open-heart surgery, Kyle and Samantha Hatch were told their daughter likely had neuroblastoma.

Things are looking up for the Hatch family. William (left) celebrated his first birthday in May — a major milestone for children with his heart condition. While Penny still has a few months of neuroblastoma treatment, her hair is growing back and her nasogastric (NG) tube is out. Still, getting to this point has not been easy.

“We were utterly broken,” Samantha said. “But we had to pull it together for our children.”

After Penny’s tumor was discovered on her MRI, she needed a biopsy to definitively diagnose what providers suspected was cancer.

On August 11, 2020, Penny walked into Seattle Children’s hospital for the procedure. It was the last time Samantha and Kyle saw their daughter walk.

After a tumor sample was collected, Penny was discharged. But at home, Samantha said her daughter started screaming in agony. “She couldn’t stand and was in unbearable pain. I thought, ‘This isn’t normal. We’re going back in.’”

Penny was quickly readmitted to Seattle Children’s for pain management. Watching Kyle hold her in the hospital, Samantha noticed Penny was kicking her left leg while her right leg hung limp.

“It was terrifying,” Samantha said. “She couldn’t move it.”

The biopsy caused Penny’s tumor to swell and press against the nerves in her spinal cord, paralyzing her right leg. To make matters worse, the biopsy confirmed Penny did, in fact, have high-risk neuroblastoma. Read full post »

A Son With a Heart Condition, a Daughter With Cancer: A Year in the Life of the Hatch Family Part One

Kyle Hatch holds baby William, who was born with hypoplastic left heart syndrome (left). Three months later, Penny (pictured with her mom, Samantha) was diagnosed with neuroblastoma.

Who are your heroes? Are they exceptionally talented? Do they have superhuman abilities? Are they destined for greatness?

Or, are they ordinary people who face tremendous challenges and persevere out of love?

Kyle and Samantha Hatch undoubtedly fall in the latter category. In the past year, one of their twin sons was born with a life-threatening heart defect. Three months later, their 18-month-old daughter was diagnosed with neuroblastoma. And all of this happened during a global pandemic.

“We often talk about literary heroes, people who face adversity even when they’re unprepared,” Kyle Hatch said. “That’s what makes them brave, and that’s why our kids are some of the bravest people we know.” Read full post »

Amidst Ellia’s Cancer Treatment, the Yees Found a Way to Help Others

From left to right: Jenna, Ellia, Nathan, and Zach.

For the first three years of her life, Ellia was “the kid who never got sick.”

“We never worried about her,” says Jenna Yee, Ellia’s mom. “She was always very spunky and funny and had this incredibly dynamic personality. We knew from the start she was a fighter.”

But when Ellia was 3 years old, she developed a fever and became lethargic. Jenna Yee took her to a walk-in clinic where she was prescribed antibiotics for an ear infection. A few days later, Ellia woke up with a rash on her arms and legs, and red dots on her neck.

Jenna Yee brought Ellia to their pediatrician, who sent them to Seattle Children’s Emergency Department for urgent blood testing. Ellia’s dad, Nathan Yee, left work to meet them there.

Nathan Yee and Jenna Yee both have professional experience in cancer research. Jenna Yee was a toxicologist who worked on cancer clinical trials and Nathan Yee was helping develop immunotherapy treatments for adults with leukemia and lymphoma at Juno Therapeutics.

“Hearing Ellia’s symptoms, my first reaction was utter denial,” Nathan Yee says. “I was sure nothing was seriously wrong. But driving to the Emergency Department, I realized the truth was screaming in my face. Ellia had a classic presentation of pediatric leukemia.”

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