Shared by Kristin Muraca, CHD Survivor and patient of Connecticut Children’s Adult Congenital Heart Program
In anticipation of the New York Congenital Heart Walk this weekend, Kristin shares her story and that of her “heart twin” Jennifer, who together are raising awareness and funds for Adult Congenital Heart Defects.
Twins; neither identical nor fraternal, not born on the same day or to the same parents. Cardiac twins; single ventricles, Fontans, Pacemakers. Young children, born 3 months apart, with young parents, living in the same Connecticut town, and seeing the same doctors. Their pediatric cardiologists introduced their moms to each other – fostering an early CHD connection. Not yet aware of their special bond, Kristin moved one small town over from Jennifer, their mothers lost touch, and their lives moved in different directions.
Fontan, pacemaker, Blalock-Taussig shunt, thoracotomy, liver cirrhosis. Pulmonary stenosis, atrial septal defect, cardioversion, accelerated junctional rhythm, Heterotaxy syndrome, dextrocardia, atrial fibrillation, heart failure all faced by Kristin and Jen long before last years’ Congenital Heart Walk (The excitement from which may or may NOT have caused Jennifer’s fluttering this past summer.) Their medical and surgical stories running parallel but never crossing for over 30 years until Kristin needed an endoscopy to screen for possible complications of her newly diagnosed cardiac induced liver cirrhosis.
When she woke up from the procedure, there was Jen standing by her side.
Jen had been told that she may be seeing adults with CHD come to her unit for endoscopies. Doctors were starting to see ties between the Fontan Procedure and cardiac induced liver cirrhosis and knowing Jen had an almost identical surgical history, her colleagues picked her brain for insight. They assigned Jennifer as the nurse in charge of Kristin’s recovery. When Kristin opened her eyes that morning, Jennifer was taking her blood pressure. It was a set-up. Even in her 15 year nursing career, Jennifer had only cared for one other patient with a single ventricle. There was an instant connection, and inherent desire to get to know each other better.
There have been years where they both could pretend they were “normal.” Their parents treated them that way. Neither was raised to feel self-conscious or less capable. They were surrounded by a community of support. Friends sometimes thought Jen’s blue lips were a fashion statement. Jennifer had her Blalock in 2nd grade and a giant paper bag filled with cards from her classmates was waiting for her when she got home. Kristin, whose 4th grade teacher was a former nurse, did her best to explain the Fontan surgery to classmates and other faculty. In turn, most kids were quite protective of Kristin, and as she got older, she would return the favor. Jennifer had her drivers’ license for 2 months before her Fontan surgery. She drove everywhere except to the hospital for surgery, knowing recovery from open-heart surgery would prevent her from going behind the wheel for several months
Kristin and Jennifer spent their entire lives making regular visits to the same pediatric cardiology office. When Connecticut Children’s Medical Center opened in 1996, the young ladies were 22 years old. Despite being adults, the young ladies continued to be followed by the pediatric group. However, they had “out-aged” the hospital, as at that time Connecticut Children’s could not admit patients over age 18. These women were incredibly fortunate though. Their doctors had been preparing for Kristin and Jennifer’s adulthood for a lifetime by planning for an Adult CHD clinic.
Four years ago, the pediatric practice created a continuity of care for Jennifer and Kristin and all of their patients surviving into adulthood. Their pediatric cardiologists Dr. Felice Heller & Dr. Shailendra Upadhyay became accredited Adult Congenital Specialists, and Connecticut Children’s began admitting adult patients with congenital defects. The “Heart Twins” epitomize the importance of appropriate life-long care with suitable and accredited doctors in hospitals that can manage their medical requirements.
These women were able to tackle the real questions of maturity with greater insight. As a child, Jennifer received a strict warning, “Never ever pick up a cigarette! It will kill you.” Or “I could never tell a woman not to have a child, but I’d hate to see all of our hard work go to waste.” She met her husband in high school; they went to the prom together. Her scars and memories of her with blue lips made her feel self-conscious but he wasn’t deterred. They adopted two beautiful children. She often reminds her daughters, “If it weren’t for my heart, we wouldn’t be a family.”
“CHD made me the mature one in my group of friends. It was seltzer for me at every party and I would make sure everyone got home safe” says Kristin. There was the heartbreak in hearing her doctors’ emphatic warnings against becoming pregnant. “It’s like anything else, you freak out for a moment, ask yourself ‘what am I gonna do?’ and live your life.” Kristin embraces other kids as her own giving her an enormous love-filled family.
“On the day that I was born, the doctors told my 20-year old mom to take me home and love me. How did she do it?” Kristin came to understand that every scar told a story and a possibly grim prognosis is not a sentence. Her parents and family and friends helped her see that. Jennifer empathically understood that. It’s the legacy these women are creating. Spreading and urging awareness. Awareness of congenital heart defects, awareness of our relationship to our own health and the importance of life-long care. Awareness of connecting with one another and knowing that “The Time to Be Happy Is Now.”
You often hear about that weird “twin thing.” The ability twins have to intuitively sense one another. It’s not so different from the CHD community we’re building here. Join The Heart Twins and Team CT CHD at the NYC Congenital Heart Walk on Sunday October 23rd.