Patient Stories

All Articles in the Category ‘Patient Stories’

Innovative Epilepsy Procedure Offers New Avenue of Treatment to Reduce Seizures

Caitlin with Dr. Stephanie Randle

A cutting-edge procedure for epilepsy at Seattle Children’s, known as responsive neurostimulation (RNS), is offering hope and seizure reduction relief to some patients who are still looking for solutions after exploring other treatment options.

With RNS, a battery-powered device is placed in a patient’s skull to reduce seizures. A neurosurgeon connects thin wires from the device to one or two parts of the brain where a child’s seizures start. When the device senses that a seizure may be starting, it sends a signal to stop it.

Seattle Children’s is one of only a handful of centers across the country to offer this device and the only one in the northwestern U.S. to use this device on a child.

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Neonatal Telehealth Takes Geography out of the Equation to Save Lives

On December 30, 2021, Kelsey Schleppy gave birth to her baby girl, Maleila. Within days of taking her home, Kelsey’s intuition told her something wasn’t right. Her pediatrician assured her Maleila’s shallow breathing and lack of appetite wasn’t anything out of the ordinary, but Kelsey kept a watchful eye, nevertheless. One morning, Kelsey noticed Maleila deteriorating rapidly and made the decision to call 911.

By the time they arrived at their local hospital in Skagit Valley, Maleila no longer had a pulse. She was rushed into Emergency Department (ED) where the team performed chest compressions to resuscitate her. The team also needed to give her epinephrine, but the standard method of inserting an IV in a vein in her arm or leg wasn’t working.

At the same time, many miles away, Dr. Rachel Umoren, Medical Director of Inpatient Telehealth at Seattle Children’s and Associate Professor & Associate Division Head for Research, Neonatology at UW, was the scheduled on-call doctor for Seattle Children’s Telehealth Services. She received a call from Skagit Valley Hospital and dialed into the portable device positioned facing Maleila’s bed.

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A Family Finds Answers in Seattle Children’s CRMO Program

Thanks to the Chronic Recurrent Multifocal Osteomyelitis (CRMO) Program at Seattle Children’s, a family found answers and treatment for their son’s pain. Now that the symptoms associated with the disease are under control, Seth Maharry is able to focus on doing things he loves most— like playing guitar.

From an early age, Seth Maharry has been an active kid. He started playing soccer at age 4, joined Little League at 5 and by the time he was 9, Seth earned a spot on a club team in Gig Harbor, Washington where he played soccer year-round. During a tournament in Portland, Oregon, Seth started to complain about the pain in his hip.

“We figured he’d just been playing soccer all weekend,” said his mom Nora. “We saw the physical therapist and they said everything was fine, but it continued to get worse and worse.”

Seth’s parents decided to take Seth to the doctor but were told it was just growing pains, though it was clear to Nora that this was something far more serious.

“That was our battle for a year and a half,” Nora explained. “My heart just ached because I knew what we were being told was not right.”

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No Stone Unturned: Seattle Children’s High-Risk Leukemia Experts Specialize in the Toughest Cases

Josh, Harper and Meagan in June 2022

Two years ago, Meagan stood in a hospital room at Seattle Children’s cradling her 1-year-old daughter, Harper, against her chest. Her fiancé, Josh, huddled close to them and kissed the thinning hair on top of their baby’s head.

A feeding tube was routed through Harper’s nose and her eyes were brimming with tears. Exhausted, she snuggled into her mom’s arms as a photographer took their picture.

Meagan and Josh feared those would be the last photos taken of their baby girl.

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Ellie Found Her Calling and Is Racing Toward Her Dream

Ellie Musgrave, who dreams of becoming a professional race car driver one day, had emergency surgery at Seattle Children’s to remove a brain tumor at a young age.

Ellie Musgrave found her calling when she was 4 years old. Her father took her to the racetrack and a dream sparked. She surprised her dad by saying, “I want to do that.”

Much like the electrical charge that brings a car to life, the draw to racing happened in an instant and throttled her into motion. It was in the sound of engines, the whooshing of the cars as they sped by on the track.

That’s when she knew she wanted to be a race car driver.

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‘I Can’t Wait to Swim!’ | How a Kidney Transplant Changed the Possibilities for 4-Year-Old Stella

4-year-old Stella Allison underwent a kidney transplant in early 2022 at Seattle Children’s

“She has so much more energy and is eating so much more. She is also moving and walking more than she ever did.”

Four-year-old Stella Allison has always loved telling jokes and playing dress up.

With energy that is contagious and a smile that lights up a room, her mom Kyley Barthlow says Stella has grown into a high-spirited and chatty child – but was born a real fighter.

 

 

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“I’ll Have Scars, Too”: A Father-Son Bond More Than Skin Deep

A few weeks after Ryder Gordon’s first surgery at Seattle Children’s, Thomas Gordon went to the tattoo shop and got an exact replica of his son’s scar on his neck and chest.

When Ryder Gordon was 2 years old, he underwent his first surgery. It took 12 hours and saved his life.

Thomas Gordon and his wife, Magi, vividly remember the day they handed over their son to surgeons at Seattle Children’s.

“It was gut-wrenching,” said Magi. “You want more than anything to switch places with your child.”

Ryder was the couple’s first child and they never imagined being thrust into a world of comprehensive medical care. But there they were, among the bright lights of the surgical suites and the bustling halls of the hospital.

“Going through a medical journey really humbles you,” added Magi. “Being at Seattle Children’s brought us a sense of comfort. I felt like they cared about us, not just as patients, but as people.”

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“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 »

Seattle Children’s Mobile ECMO Service Treats Critically Ill Kids During Transport Across More Than a Million Square Miles

In 2016, Seattle Children’s extended their mobile extracorporeal membrane oxygenation (ECMO) capabilities to provide the service to critically ill children during transport to the hospital from anywhere in a five-state region. ECMO is an advanced life-support therapy that functions for the heart and lungs when the organs fail or need to rest. Seattle Children’s became the first children’s hospital on the West Coast to offer mobile ECMO service, providing critically ill patients with life-saving cardiac, respiratory or transplant care while they are being transported to the hospital.

“The main reason we developed mobile ECMO is because it enables us to take care of kids over a very broad region and offer the same type of high-level medical care to the kids who are not fortunate to live near a hospital like Seattle Children’s,” said Dr. Michael McMullan, chief of Cardiac Surgery and director of mechanical cardiac support and extracorporeal life support services at Seattle Children’s, as well as an professor of surgery at the UW School of Medicine. “When we looked at data in Washington state, we found that kids who do not live near a hospital like ours are at a three-fold increased risk of dying of illness due to a lack of access to care.” Read full post »

A New Neurosurgical Procedure is Bringing Promising Seizure Relief to Some Epilepsy Patients

Epilepsy can be very difficult to treat – and some families explore a range of options seeking relief from seizures for a child with epilepsy looking for a solution. For 14-year-old Taylor Johnson, a procedure known as deep brain stimulation (DBS) resulted in her experiencing a completely new life and the significant seizure relief she and her family have been trying to find.

In deep brain stimulation, a small battery-powered device sends low-level electrical signals through the brain. The device is similar to a pacemaker in that it uses electrical pulses to help regulate brain function. It can be programmed remotely to help regulate brain function and reduce seizures.

During surgery, a neurosurgeon places two thin electrical wires into deep brain tissue. The wires are connected to a small battery that can be controlled remotely to stimulate the area of the brain called the thalamus. The thalamus is the central point for relaying signals to other parts of the brain. Read full post »