Nearly six months following a heart-lung transplant, Nicole Kouri makes a triumphant return to school, alongside her twin sister Isabella. It was a pact she made with her Dad back in August of 2015, while her friends were lying by the pool, soaking up the final days of summer, and Nicole was lying in a bed at Boston Children’s Hospital.
14-year-old Nicole was born with a ventricular septal defect (VSD) — otherwise known as a hole in the heart — and pulmonary hypertension, a serious condition associated with VSD that makes it difficult for blood to flow properly through the lungs.
Being sick was Nicole’s “normal.” …
Fifteen years ago, days before her graduation from kindergarten, Shannon O’Donnell played in the hallway of Boston Children’s Hospital while cardiologist Dr. John K. Triedman broke the news to her parents Bill and Laura O’Donnell. Shannon’s recent fainting spells were not due to asthma or a vasovagal response. Shannon — their happy-go-lucky, active 6-year-old — had idiopathic pulmonary hypertension, abnormally high blood pressure in the arteries of her lungs.
Untreated, pulmonary hypertension causes the heart muscle to weaken and eventually fail completely. There was — and still is — no known cause and no known cure.
Bill and Laura were shocked. Before arriving at Boston Children’s, the O’Donnells had been told that the fainting episodes were not a big concern and could even be Shannon looking for attention. “It took Dr. Triedman three or four times to tell us before it sunk in,” remembers Bill. “He finally had to look us straight in the eye and tell us that our daughter could die from this disease. We were devastated.”
Photos by Katherine C. Cohen
On an unseasonably warm day in February, the sun shines brightly at Clasky Common Park, a New Bedford town gem with views of the river. Twenty-one-year old Sharieff Hester sports a pair of cherry-red shades and a big smile. He walks confidently around the park, his father and sole caretaker David Hester dutifully following behind, checking in often. “Are you cold son?” he asks. Sharieff answers through his tracheostomy, “I’m fine, Dad.”
David stops to adjust his son’s scarf and offer him a sip of water. “We have a routine every morning. The first thing I do is hug Sharieff and tell him how much I love him. Then I make sure his trach is clean and dry, and we say a prayer together.”
Sharieff has been cared for at Boston Children’s Hospital since his birth in 1994. His main diagnoses are Arthrogryposis, a rare congenital condition characterized by stiff joints and abnormally developed muscles; Klippel-Feil syndrome, a rare birth defect that causes some of the neck vertebrae to fuse together; restrictive lung disease; and pulmonary hypertension. …
As a cardiac patient at Boston Children’s for the past 29 years, Lauren Hoey had learned to thrive in spite of her condition, but she never knew that she would be learning these coping skills in order to teach her daughter, Kaylee, the same skills and attitude.
When Lauren was just 18 hours old, she underwent her first heart surgery for truncus arteriosus, a rare congenital heart disease (CHD) that means only a single vessel arises from the heart. Normally, there are two separate vessels coming out of the heart. In 1983—the year Lauren was born—she stayed at Boston Children’s for more than one month. Most children who’ve had surgery for this condition recover and grow normally, although they are at risk for future arrhythmias, leaky valves and other heart complications. Also, like Lauren, these patients may require additional procedures before they reach adulthood.
Over the years, Lauren had three more cardiac surgeries and back surgery for scoliosis, and was fitted for two hearing aids. Twenty-five percent of babies born with congenital heart defects develop scoliosis. Yet, she didn’t allow these challenges to hold her back—succeeding as a competitive jazz and ballet dancer. She was an active member of the dance team during all four years at Westfield State College in Massachusetts.
“While I knew I couldn’t run up and down a soccer field, I found other sports in which I could participate and still enjoy,” Lauren says. “From the time I was a child, I had to be acutely aware of what I was capable of doing, but I didn’t allow the limitations to hold me back.” …