Alexis, a 7 year-old vascular anomalies patient from Indiana
By the time Alexis Stringer was 7 years-old, she had already undergone a lifetime’s worth of medical procedures; 47 of them to be precise.
Alexis was born with purple areas on her face and neck. At first, doctors thought it was due to birth trauma. But over time, when Alexis was 7 weeks old, doctors determined she instead had a series of blood and lymph vessels that were not developing properly, which are known as vascular anomalies.
The traditional treatment for this disfiguring condition meant that Alexis underwent a procedure called sclerotherapy where chemicals are repeatedly injected into the veins to make them shrink. The procedure can be painful and has to be performed several times under general anesthesia. In addition to the risks associated with repeated anesthesia, sclerotherapy came with additional risks as the high dose of the substance injected has the potential to destroy healthy tissue and even stop one’s heart.
Adorned in pastel blue smocks with smiles from ear-to-ear, it can be easy to spot a Seattle Children’s volunteer.
From the volunteers that do arts and crafts with patients in the playroom to those who deliver key items to patient rooms and refill coffee pots for medical staff, every volunteer at Seattle Children’s is significant in helping to keep the hospital running smoothly each day.
Just last year, volunteers donated over 120,000 hours of service, which highlights the commitment of the more than 500 individuals who serve Seattle Children’s every month.
In honor of National Volunteer Week, Seattle Children’s is showing gratitude to its volunteers by sharing the stories of six individuals who have generously donated their time to strengthen the organization’s mission to provide hope, care and cures to help every child live the healthiest and most fulfilling life possible.
Kim Arthur, clinical research scientist at Seattle Children’s, holds both of her preemie daughters for the first time in May 2013.
My daughter pushes my hand away abruptly and the spoonful of food goes flying. I turn to her twin to coax her to eat a spoonful of puréed lentil soup, and she promptly gags on the tiniest lump and spits it out.
Typical case of the terrible twos? No, they are 3 and a half, and they are not just your average picky eaters. They were born prematurely at 26 weeks, and after five months in the hospital they had to get surgically placed feeding tubes in their stomachs because they weren’t able to breastfeed or bottle-feed.
And here I am, three years later, doing everything in my power to coax them to eat enough food by mouth to get rid of those tubes.
I turn away and say out loud, “I can’t do this.”
It’s not the first time I’m saying these words. I either say them or think them every time I sit down for practice meals with my girls. We are supposed to practice eating four times a day in order to get them to eat enough that we can get rid of those tubes.
Max Agnew and his mom, Brianna Agnew, eagerly read the book he received from Dr. Lisa Herzig as part of the Neurodevelopmental Clinic’s Reach Out and Read program.
From story time at preschool to reading bedtime stories, books play an important role during childhood.
“Reading together is a critical part of early childhood brain development,” said Dr. Emily Myers, a pediatrician in Seattle Children’s Neurodevelopmental Clinic. “Reading helps children build language and social skills. When stories are a shared experience between kids and their families, it helps build positive, healthy relationships.”
During her residency at the University of Chicago, Myers learned about Reach Out and Read, a national program where primary care providers give new books to children ages 6 months to 6 years during well-child visits. Providers use the books to talk with families about child development and parent/child relationships, and to observe developmental milestones and actions during clinic visits.
Seeing the benefits of Reach Out and Read inspired Myers to bring the program to the hospital.
“I started the program in the Neurodevelopmental Clinic because I was struck by how many families didn’t have books at home,” she said. “I found that there were a variety of reasons why they didn’t have books or read with their children. Reach Out and Read breaks down many of these perceived barriers, and families get a book that’s theirs to take home and keep.”
A year ago, On the Pulse shared the harrowing story of 8-month-old Lincoln Seay. Lincoln was born with heterotaxy syndrome, a severe birth defect that caused his heart to develop on the opposite side of his body. In order to survive, he needed a heart transplant.
In November of last year, Lincoln was placed on the transplant list, but as each day passed, his condition continued to worsen and doctors questioned if he would make it to transplant.
Tara Peerenboom is one of 35 licensed athletic trainers in the Seattle Children’s Athletic Trainers Program.
They are a constant presence on the sidelines of sporting events, but they don’t adorn a jersey or get a trophy at the end of a season. We see them as they spring into action when an athlete suffers an injury. They run onto the field or court and quickly care for an athlete writhing in pain, but their time in the limelight is short lived, at least from what we see from the stands.
What you don’t see are the hours athletic trainers spend before, during and after games preparing, rehabilitating or counseling athletes and coaches. And so, in recognition of Athletic Training Month, On the Pulse shadowed Tara Peerenboom, an athletic trainer at Seattle Children’s, to get a behind the scenes look at her role both on and off the field.
“People see us on the sidelines and think of us as the individuals who give water to athletes,” said Peerenboom. “They don’t see the time we spend in the athletic training room before, after and during a game or practice. We’re not just medical providers. Our athletes trust us, and we’re there for them during difficult times. Taping and getting ready for games is a small part of our work.” Read full post »
Young pitchers can avoid throwing injuries by following some simple guidelines.
According to The American Journal of Sports Medicine, more than 15 million people will be playing baseball and softball this spring and summer, nearly 5.7 million of which are children in eighth grade or lower. Dr. Michael Saper, an orthopedic surgeon and sports medicine specialist at Seattle Children’s, has some useful information about how young players can avoid arm injuries.
Before joining Seattle Children’s, Saper trained under Dr. James Andrews, a renowned orthopedic surgeon who has treated many professional athletes, including hall of fame pitchers Nolan Ryan and John Smoltz. It was in working with Andrews that Saper developed his passion and expertise for the treatment and prevention of throwing elbow and shoulder issues.
Saper noticed injuries that were common in high-level athletes occurring in younger athletes and realized that education about how to stay healthy is just as important as treating the patient after a serious arm injury occurs.
Emmy Anderson and her daughter Wren sharing a happy moment
When your child is sick with a rare condition that can’t be named, the search for an answer can seem frustrating and hopeless. For Kirk and Emmy Anderson, navigating the lengthy diagnostic process for their daughter, Wren, was something they endured with the hope that an answer would eventually come.
By about 6 months of age, Kirk and Emmy noticed that Wren was not meeting her developmental milestones. After a febrile seizure led to a stay in in Seattle Children’s Neonatal Intensive Care Unit (NICU), they received the news that a brain MRI showed Wren had a decrease in the amount of white matter in the brain, as well as a fluid filled sack growing between her brain and spinal cord. Despite the findings, doctors didn’t yet know what was causing these issues to arise.
On the Pulse sat down with Danielson to talk about this achievement and how OBCC, a community clinic located in Seattle’s Central District that provides medical, dental, mental health and nutrition services to families, approaches caring for the whole child. Read full post »
Brooklyn Clasby, now 10 years old, received a Potts shunt at the age of 8.
In February 2010, Jennica Clasby knew something was wrong when her 3-year-old daughter, Brooklyn, said she needed to sit down because her “heart hurt.”
“I thought it was really odd to hear that coming from a 3-year-old,” Clasby said. “I sat her down on my lap, put my hand over her heart and I was terrified to feel that it was practically pounding out of her chest.”
Clasby and her husband Brandon, who lived in Colorado, rushed Brooklyn to the emergency room where they were shocked to learn she was in heart failure. Brooklyn was diagnosed with pulmonary hypertension (PH), or high blood pressure in the lungs. PH is a chronic condition that occurs when the muscle in the wall of the blood vessels and arteries in the lungs thickens and cannot properly expand to receive blood coming from the heart. This causes resistance to the heart, which then works harder to pump the blue blood in need of oxygenation into the lungs. Over time, the strain on the heart can cause it to fail.
“Our world was turned upside down,” Clasby said. “It’s incredibly hard to hear that your daughter has an incurable, lifelong disease that will progressively get worse. It changed the way we lived and gave us a new appreciation for life.”
Seattle Children's complies with applicable federal and other civil rights laws and does not discriminate, exclude people or treat them differently based on race, color, religion (creed), sex, gender identity or expression, sexual orientation, national origin (ancestry), age, disability, or any other status protected by applicable federal, state or local law. Financial assistance for medically necessary services is based on family income and hospital resources and is provided to children under age 21 whose primary residence is in Washington, Alaska, Montana or Idaho.