Zachary Harper, 23, a young adult living with congenital heart disease, receives care at the Boston Children’s Hospital Heart Center.
I was recently admitted to Boston Children’s Hospital. Though I am no stranger to these visits, they are still draining — both physically and mentally.
You see, seven years ago, when I was 16, I went into sudden cardiac arrest at school. After an array of tests, my doctors concluded that a virus had attacked my heart. But five years later, another event led to a new diagnosis: arrhythmogenic right ventricular cardiomyopathy, or ARVC, a rare genetic disease that causes an abnormal heart beat. Treatment for this disease consists of medication and an Internal Cardiac Defibrillator (ICD).
For two years, I didn’t have any serious problems, but recently I experienced symptoms of cardiac arrest again. My dad decided we were going to the hospital just to be safe. While there, my heart started to go into small, slow bursts of ventricular tachycardia. Nothing too fast — it wasn’t to the point where my device had to shock me — but it was enough to really stress a person out!
As I’m now 23 years old, my parents and I felt I could manage being in the hospital alone for what we thought would just be a night or two. But as time went by, it seemed these cardiac events were happening a little too frequently, and my doctors were concerned. The arrhythmias seemed to happen mostly at night, when I was alone, and that started to take a toll on my anxiety.
Olivia Burgess knows every nook and cranny of Boston Children’s Hospital. The 13-year-old and her parents have traveled from their home in Bermuda to Boston since Olivia was three years old for ongoing treatments for systemic onset juvenile rheumatoid (idiopathic) arthritis and pediatric lupus.
“The unpredictable and severe nature of Olivia’s condition and the frequent travel required for medical treatment can be stressful at times,” says her mother Traci. Olivia sees providers in multiple departments: cardiology, nephrology, pulmonology, dermatology, neurology, gastroenterology and orthopedic surgery.
Drs. Fatma Dedeoglu and Marybeth Son, both in the Boston Children’s Rheumatology Program, are Olivia’s primary providers and serve as home base for her frequent visits. “We have cared for Olivia since she was a toddler. She’s like one of our own children,” says Dedeoglu.
The hospital’s four-legged, furry volunteers and their owners also play important roles in Olivia’s care and help the teen stay positive.
Olivia is an enthusiastic participant in Boston Children’s Pawprints Program — the hospital’s dog visitation service.
“Her face lights up when she talks about dogs. This program can really make a difference for kids who love animals,” says Son. …
I’ve been a Pawprints volunteer for almost two years.
My owner thought I was going to get kicked out on my very first visit. There was a little girl who was quite sick. She was 2 or 3 and hadn’t walked for a while. Her Mom had her squeezed between her knees.
I edged up to the little girl, and she draped herself over me. Mom let her go, and the girl started walking with me.
A nurse walked in and shrieked. Uh-oh.
Then she told us the little girl hadn’t walked for months.
Two weeks later when we returned, the same little girl ran down the hallway toward me. Mom told me she hadn’t stopped walking since our last visit.
What else do I like about my job?
It’s great seeing people over time and developing a relationship with kids who are here a long time.
I like to flop over on my back, so kids can rub my tummy. I love tummy rubs.
Caring for patients is a true team effort. Care Team highlights the dedication of the people throughout Boston Children’s who do their part to comfort and support patient families each and every day.
A team at Children’s Hospital Boston is currently in the midst of a research initiative, poring over videotapes of patient visits to examine an evolving therapeutic tool that brings the concept of “hands-on” care to a whole new level.
But instead of the traditional white coats, the visitors in these videos sport white, black, brown and golden ones; all made of fur. Aimee Lyons, RN, BSN, MSN, director of Nursing and Patient Services for the Medical/Surgical Intensive Care Unit, Maura Ammon, MSW, LCSW and Kathryn Atkinson, MSW, LCSW, both social workers in Children’s Center for Families, are studying how dog visits affect hospitalized kids. The research will be used to enhance Children’s Pawprints Program, which sets up supervised dog visits between hospitalized children and their families to provide a fun, interactive diversion from their usual hospital routine.
“We’re looking closely at how the dogs react throughout the stages, but what we appreciate most about dogs is exactly what the kids respond to,” says Lyons, who expects to finalize the study later this year. “Dogs don’t care if the child in front of them is sick; they’re just so happy to see that child.” …