Patient Care

All Articles in the Category ‘Patient Care’

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.

“I did not want to return to Alaska with my baby on a feeding tube,” Heather said adamantly. “With all of the medical issues we worried about, we wanted Dawson to be able to eat normally and not have to suffer through tube placements and further complications.”

The trouble with feeding tubes

Seattle Children’s physical therapist Jenn Fridgen and dietitian Lauren Boyer understood Heather’s concern. They’ve heard from many families whose children have recovered from open-heart surgeries and continue to rely on a feeding tube for nutrition.

Lauren (left) and Jenn build close relationships with families long before tube weaning begins. Jenn begins discussing feeding strategies and techniques right after the child’s birth. Soon after, Lauren guides them through a nutrition plan.

This is often the case for babies born with a single ventricle defect, in which one of the two pumping chambers in the heart, called ventricles, isn’t large enough or strong enough to work correctly.

These babies typically need multiple surgeries, and it’s critical they gain weight and grow appropriately before each one. To accomplish this, babies with single ventricle defects, like HLHS, are often given a nasogastric feeding tube, which carries food and medicine from the nose to the stomach.

Many infants require the NG tube until they have recovered from their second surgery. Although efforts are made to maintain children’s oral skills during this time, it can be difficult for patients to learn to eat by mouth after having an NG tube for several months.

“Families are provided close outpatient follow-up in between their first and second surgeries,” Lauren said. “We want to be sure they are also taught how to get their baby off the feeding tube when that time comes.”

Together with the Single Ventricle Program team, Jenn and Lauren have implemented a program to help these patients begin eating by mouth using an evidence-based intervention known as hunger-based tube weaning.

How feeding less leads to eating more

When a child has a feeding tube, they can experience hunger less frequently and therefore lack the motivation to eat by mouth. With hunger-based tube weaning, parents gradually reduce tube feedings to promote hunger.

“That’s when we see infants become more interested in oral feeding,” Jenn said.

Before weaning begins, Jenn and Lauren work with the single ventricle cardiologists to make sure a baby is stable enough to begin tube weaning.

Additionally, an infant must be able to safely swallow food — without inhaling it into their lungs — before they can be weaned.

“We anticipate a baby may have suboptimal weight gain during the tube weaning process,” Lauren said. “However, once oral feeding is established, the child will be able to gain weight without the feeding tube. That’s why it’s so important to have an interdisciplinary team that closely monitors our patients.”

Helping Dawson

For the first three days of his life, Dawson eagerly drank from a bottle. But after his first surgery, he was too sick to eat by mouth and needed an NG tube. Additionally, Dawson’s left vocal cord was partially paralyzed, a common complication of heart surgery that makes it difficult for the child to swallow.

Dawson at just 1 week old, after his first heart surgery.

Dawson needed a feeding tube leading up to his second surgery and while he recovered afterward. As Heather prepared to bring her baby back to Alaska, Jenn and Lauren began the process of hunger-based tube weaning.

“I had so many discussions with Jenn along the way,” Heather said. “She had so many ideas and was confident we would get him eating orally.”

Once home, Heather continued working with the team via telemedicine. She would send them videos of herself trying to give Dawson a bottle, and they would offer tips and tricks on video calls.

Initially, Dawson was not drinking from a bottle at all. But after a few weeks of weaning, in which Lauren and Jenn closely followed his oral intake, growth and overall tolerance of weaning, his hunger regulated, and he became increasingly interested in his bottle.

“One day, he just drank from the bottle like there was no tomorrow!” Heather exclaimed. “The next day, we took the feeding tube out and never looked back.”

Removing Dawson’s feeding tube led to improvements beyond eating. He began to make major developmental leaps.

“With the NG tube, we had to keep Dawson’s hands covered so he wouldn’t pull it out,” Heather said. “It kept him from learning to grasp for the first four months of his life. Once the tube was out and his hands were free, his milestones shot off the chart!”

Absolutely worthwhile

To date, Jenn, Lauren and the single ventricle team have guided many babies through hunger-based tube weaning. All of them learned to eat by mouth and are thriving in their growth and development.

“The best part of our day is when our whole family sits down for dinner together,” Heather says. “We can tell how happy and curious Dawson feels when he tries new foods with our family. That would be very different if he was still connected to a tube.”

“For many families, not being able to feed their baby by mouth can be very disappointing,” Lauren said. “Witnessing children and families bonding through eating is one of my favorite parts of my job.”

Jenn and Lauren hope hunger-based tube weaning will become the standard of care for all patients with single ventricle heart disease nationally.

“The families we’ve worked with have been so happy and grateful,” Jenn said. “They talk about how not being reliant on a feeding tube has changed their entire family’s life. That motivates me at work every day.”

How a “Kid at Heart” Surgeon Created Seattle Children’s Hospital on Minecraft

“Before COVID-19 restrictions, patients facing surgery were given the opportunity to tour the hospital with their families ahead of time to help ease the nerves and to become comfortable with the process. Since that option became unavailable, Dr.  Henry Ou took it upon himself to create a virtual tour that a kid can walk through on Minecraft! In their world! It is very impressive, and you can tell he has spent a lot of time and effort perfecting it for the kiddos.” — Mariette Broncheau, partner employee — Research

As a self-described “kid at heart,” Dr. Henry Ou said he’s got a good sense for how patients may be feeling, including what they’re interested in and which situations may be scary for them. When the pandemic struck and hospital visitation had to be limited, Ou used his kid-like perspective to accomplish a task very different than his usual surgical case — creating a Minecraft version of the hospital.

Minecraft is a video game that allows players to virtually explore a 3D world with different terrain and environments to accomplish various tasks or missions — a virtual LEGO world of sorts. Over the past 18 months, Dr. Ou has taken thousands of videos and photographs around the hospital and spent hundreds of hours during his personal time designing a Minecraft version of the hospital building.

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How the OBCC Team Is Stepping Up, and Out, to Help During the Pandemic

Zenashe (pictured on left) and her two children pick up food and other supplies at one of the Seattle Children’s Odessa Brown Children’s Clinic pickup locations in August.

When the economic and social impacts of the coronavirus pandemic began taking root in early spring 2020, the team at Seattle Children’s Odessa Brown Children’s Clinic (OBCC) immediately anticipated the devastation and hardship it would bring.

“From the start, we recognized that the families we serve were being disproportionally negatively impacted by the virus itself, and its effects,” said Arlesia Bailey, senior director of community health and development at OBCC.

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Cancer Research at Seattle Children’s Contributes to FDA Approval of CAR T-Cell Immunotherapy Treatment for Adults with Relapsed or Refractory Large B-Cell Lymphoma

The Therapeutics Cell Manufacturing facility at Building Cure translates laboratory discoveries into real-world treatments.

The U.S. Food and Drug Administration on Feb. 5 approved Bristol Myers Squibb’s Breyanzi, a chimeric antigen receptor (CAR) T-cell therapy used to treat adults with certain types of large B-cell lymphoma who have not responded to or who have relapsed after standard treatments.

The approval was supported by research at Seattle Children’s, including the chimeric antigen receptor (CAR) T-cell product, patient product manufacturing for Juno Therapeutics’ TRANSCEND trial, and data from the Pediatric Leukemia Adoptive Therapy (PLAT-02) clinical trial. In the PLAT-02 clinical trial, 93% of patients with relapsed or refractory acute lymphoblastic leukemia achieved initial remission, and about 50% were still in remission one year after therapy. Read full post »

Liquid Biopsy Promising in Children With Vascular Malformations

Ezra Anpo (right), here with his sister Aria, participated in a research study investigating a liquid biopsy approach to providing a genetic diagnosis in children with lymphatic malformations.

Doctors at Seattle Children’s are investigating whether a simple liquid biopsy containing a small amount of fluid from a patient may someday provide an easier route to a genetic diagnosis in children with vascular or lymphatic malformations.

The work is a collaborative effort led by Dr. James Bennett, a clinical geneticist and co-director of the molecular diagnostic laboratory at Seattle Children’s and Dr. Jonathan Perkins, an otolaryngologist and director of the Seattle Children’s Vascular Anomalies Program. Liquid biopsy offers an alternative to the more invasive surgical biopsies required – when a genetic, or molecular diagnosis, is needed to help guide a patient’s treatment.

“We can now provide a specific genetic diagnosis for a lot of vascular malformations,” Bennett said. “That’s important for families for a variety of reasons with one being it’s just extremely healing and powerful to know the reason why your child has these differences.” Read full post »

Minimally-Invasive Imaging and Laser Surgery Solve Elusive Epilepsy

Giorgia Graham, 11, is among the 20 to 30% of children with epilepsy whose seizures do not respond to medication. Surgery is an option if doctors can pinpoint the source of the seizures and remove the abnormal tissue without affecting the child’s ability to process information, see, speak or move.

When 11-year-old, Giorgia Graham, told her parents her cheek was going sporadically numb, they thought it was because she banged her face playing tag.

But when the numbness kept coming back, her parents realized it was something more serious. They discovered Giorgia was having seizures when she experienced a grand mal seizure sleeping one night with her mom while her dad was traveling out of the country. Though the seizures remained mostly isolated to Giorgia’s face, some, like this one, took over her entire body and caused her to lose consciousness. At worst, she was having more than 60 seizures a day.

“When medications didn’t stop the seizures, Giorgia’s mom, Christina, and I knew brain surgery was our only hope,” said Nick Graham, Giorgia’s dad. “That’s when we came to Seattle Children’s for a second opinion to see if surgery was possible.” Read full post »

Out of Heartache, Hope Surfaces for Colton’s Metabolic Disorder

Colton Iverson holds a photo of his older sister, Cody. Photo courtesy Copper Ridge Photography.

Before his first breath, Colton Iverson had already received the gift of a lifetime. Just days old, he became the youngest patient to go on a drug recently approved by the U.S. Food and Drug Administration (FDA) for the treatment of a life-threatening genetic condition called very long-chain acyl-CoA dehydrogenase, or VLCAD, deficiency.

For his parents, the hope it inspired did not come without heartache.

“Colton wouldn’t be here today without our first born, his older sister Cody,” said his mom, Lisa Iverson.

A few days after coming home as excited new parents of a healthy baby girl with an Apgar score of 10, Cody went lifeless in Lisa’s arms one morning. She and her husband, Ty Iverson, rushed Cody to their local hospital in northeastern Washington.

“They did everything they could to save her and they couldn’t,” Lisa said. “For about week, we had no idea what happened to Cody.”

On the day of Cody’s service, the Iversons heard from their family medicine doctor, Dr. Geoffry Jones.

“As we were driving home, I remember the exact spot on the road when we got the call from Dr. Jones,” Lisa said. “He said her newborn blood test showed she had a genetic condition called VLCAD. He recommended we get in touch with a specialist at Seattle Children’s to learn more.” Read full post »

“It’s Been Hard, But There’s Hope”: Family Joins Experts to Shed Light on AFM

Maxford Brown, 16, with his family at Seattle Children’s. Maxford was diagnosed with acute flaccid myelitis, or AFM, in 2017. Pictured from left to right: (front) Maxford and his younger brother, Zachary; (back) Maxford’s dad, Jeff; mom, Tracy; and older sister, Grace.

It’s been over three years since Maxford Brown woke up one morning not feeling well. Neither Maxford nor his family had any idea that it would mark the beginning of a life-changing journey with a rare, but serious neurological condition called acute flaccid myelitis, or AFM.

“I suggested it might help for him to lay down. When I went to wake him up, he had lost all ability to move on his own,” remembered his mom.

In a state of shock, Tracy Brown called their pediatrician to describe what had happened to her son.

“I remember asking our doctor if we should make an appointment,” she said. “That’s when they told me we needed to get Maxford to Seattle Children’s Emergency Department right away.” Read full post »

Making Sense of Restless Sleep Disorder in Children

Emily Caveness, 9, had always been a very active sleeper. When her lack of restful sleep started disrupting her social and school life, her parents sought the help of sleep medicine experts at Seattle Children’s where they first learned of restless sleep disorder in children.

An international panel of sleep experts is adding a new pediatric sleep disorder they call restless sleep disorder, or RSD, to parents’ and pediatricians’ radars.

Led by Seattle Children’s pediatric sleep specialist, Dr. Lourdes DelRosso, the group shares their consensus on a medical definition of RSD in a new paper published in Sleep Medicine. Known to occur in children 6-18 years old, RSD can lead to attention impairment, mood and behavioral problems and other issues at home and school due to poor sleep quality.

“For many years, those of us in sleep medicine have recognized a pattern of sleep that affected a child’s behavior but didn’t fit the criteria for other known sleep disorders or conditions linked to restless sleep like obstructive apnea or restless legs syndrome,” DelRosso said. “This work provides consensus on a definition and diagnostic criteria for RSD, offering a new tool to help more children suffering from restless sleep.” Read full post »

Boeing Donates $2.5 Million to Help Fund Vital Programs at OBCC

Odessa Brown Children’s Clinic (OBCC) is more than a medical home for families. OBCC is often affectionately called a second home by the patients and families it serves, and the clinical staff are referred to as an extension of their family. OBCC is a clinic, but it’s also something much larger: it is hope.

The team at OBCC represents the communities they serve and advocates for the well-being of patients and families both inside the walls of the clinic and beyond.

Today, Boeing has committed to investing $2.5 million to help fund vital programs at OBCC and a new, second OBCC to better serve under-resourced, ethnically diverse communities. Read full post »