Authors: Rose Ibarra
This is the second holiday season Seattle Children’s Building Maintenance Technician Jerome Ramos will spend with his family in the hospital.
His daughter has been in the hospital waiting for a heart transplant since July 2021. Before coming to Seattle Children’s, 10-month-old Kaelyn, of Honolulu, Hawaii, was experiencing shortness of breath.
When her face puffed up one day, her parents, Jerome and Christine Ramos, thought Kaelyn was having an allergic reaction and brought her to their local emergency department. Providers ruled out allergies, but recommended Kaelyn have an echocardiogram (ECHO) — a common test used to measure heart function.
Shortly after leaving Kaelyn with the technician, Christine and Jerome heard a voice over the hospital paging system: “Code Blue, ECHO.” “We were in shock,” Christine remembers. “She seemed fine when we dropped her off but when we got back to Kaelyn, we saw our child being resuscitated. It was devastating.”
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Authors: Ashley Speller and Jenni Carson
PART ONE: From witnessing exceptional care and compassion given to children in their own lives, to receiving treatment first-hand, this weekly series features Seattle Children’s employees and the life experiences that drove them to pursue careers in healthcare.
Sofia Carlo was diagnosed with Ewing sarcoma as a child
Shortly after Sofia Carlo finished the sixth grade, she started experiencing bouts of intense back pain.
“I went to see my primary care provider who thought I may be developing some scoliosis,” she recalled. “Upon receiving that scoliosis X-ray, I was referred for an MRI because the radiologist noted on my X-ray that I had osteophyte on a portion of my vertebra.”
Osteophyte is an abnormal bone growth, also known as a bone spur. Within a week of Carlo’s MRI, she was being treated at Seattle Children’s where she received a biopsy.
“That MRI revealed a mass growing in my spine. I was then officially diagnosed with Ewing sarcoma bone cancer at just 12 years old and was getting chemotherapy within two weeks of that original scoliosis X-ray,” she said.
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Authors: Bob Sable and Madison Joseph
Twins Juniper ‘June’ and Hazel’s mom, Katie Harmston, was the first Fetal Care and Treatment Center patient to undergo a laser ablation procedure for TTTS.
Katie and Nic Harmston were distraught as they drove to Kaiser for an ultrasound in July 2021. Katie was six and a half weeks pregnant but was experiencing symptoms of a miscarriage. They both feared the worst.
The Harmstons held their breath as the ultrasound began. After a moment, the sonographer smiled and said, “We have a heartbeat.” Katie and Nic were nearly overwhelmed with relief. Then the sonographer said something unexpected.
“Hold on — there are two heartbeats!”
“We were shocked to find out it was twins,” Katie says. “I just started crying and laughing.”
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Authors: Anna Altavas
Update – February 27, 2020: It is our pleasure to share that the individual featured in this story now uses she/her pronouns and goes by the name Iris. She continues to be seen at Seattle Children’s Gender Clinic and advocate for gender affirming healthcare.
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In celebration of LGBTQ+ Pride Month, On the Pulse shares a story about 17-year-old Torin, a Seattle Children’s patient who battled cancer. After years of treatment and rehabilitation, Torin is now standing strong, yet continues to face challenges that come with identifying as gender non-binary. Torin talks about their struggle and overcoming oppression by not being afraid to express their authentic self.
From as early as Torin could remember, they used writing as a way of expressing emotion.
“I knew I loved writing when I wrote my first series of stories in elementary school,” Torin said. “They were about the adventures of ‘Pencil Man,’ a superhero who had the power to draw and erase things.”
Although Torin finds the plot of the story silly now, it serves as a poignant theme in their life.
Each individual should have the power to create their own story and be true to themself.
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Authors: Ashley Speller and Rose Ibarra
4-year-old Ruby was born with biliary atresia and had a transplant in 2022 at Seattle Children’s
After receiving a life-saving liver transplant at Seattle Children’s, 4-year-old Ruby Josephine Mwamba is thriving and living a dramatically different life than she was at this time last year.
Ruby was born with biliary atresia, a liver condition that occurs when a baby’s bile ducts do not form normally and are unable drain bile. Bile is the liquid that helps the body break down fats, from the liver. When it doesn’t drain, it can cause scarring of the liver and yellowing of the skin and eyes called jaundice.
Ruby’s parents Melissa and Gabriel Mwamba learned about Ruby’s disease shortly after she was born. At only a few months old, Ruby had surgery to try to correct her condition, but unfortunately the relief was short-lived.
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Authors: Ashley Speller
10-year-old Stella is a patient at Seattle Children’s
Researchers at the Centers for Disease Control and Prevention (CDC) have teamed up with clinicians at Seattle Children’s to identify and evaluate the best urologic management for newborns and young children with spina bifida in a nationwide study called (Urologic Management to Preserve Initial REnal function (UMPIRE).
Launched in 2014, the multi-site, multi-year UMPIRE program aims to increase the understanding of kidney, bladder health and function, which are closely linked, in the early years. It also brings together a unique collaboration of doctors and nurses from more than 20 clinics across the country including Seattle Children’s Urology Program, which has been ranked among the top 10 pediatric urology programs the United States for the past three years by the U.S. News & World Report.
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Authors: Madison Joseph
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 family practice doctor assured her Maleila’s shallow breathing and lack of appetite wasn’t anything out of the ordinary, but Kelsey kept a watchful eye, nevertheless. Within a few days of bringing Maleila home, Kelsey noticed Maleila deteriorating rapidly one morning 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.
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Authors: Casey Egan
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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Authors: Madison Joseph
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 family practice doctor 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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Authors: Isabelle Minasian and Ashley Speller
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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