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.
Long Island middle school teacher Carole Going texts her student Jessica every day. Even just a simple exchange of “How are you feeling today?” and “Good, thanks!” can calm Going’s nerves. “I didn’t know her very well before the event happened,” she says. “We only had eight classes by that point.”
A month and a half ago, Jessica was in science class when she suffered a sudden cardiac arrest.
Going says it was her co-teacher, Ann Marie Carlson, who first noticed Jessica appeared weak: “She started to ask ‘Are you OK?’” but couldn’t even get all the words out before Jessica fell back on the floor.”
Often you hear from parents that they want their child to be the best, the standout star — the child who rises above the rest and sets herself apart from the group as unique or special. But when you have a child who is often told NO, who has been set apart from a group because she is considered too fragile, too sick, too something … your hopes are different.
No child wants to be left out— an onlooker, an outlier — as many of our children are in their everyday worlds. For a parent, seeing your child cast aside due to something completely out of her control is often heartbreaking.
When Ligia Jordao, a nurse who worked for many years with the Heart Center’s Electrophysiology Program, told my husband Mark and me about Pacemaker/ICD Camp, we were skeptical. I couldn’t imagine sending our Grace off for a weekend by herself without us. …