Age at Diagnosis: 27
Age Today: 37
I am 7 months pregnant, and I have HCM. A few years ago, I thought these two conditions could never coexist, but thanks to the encouragement, support, and top-shelf care of Dr. Martin "Marty" Maron, Dr. Barry Maron, Noreen Dolan, NP-C, and everyone at Tufts MC’s HCM Center, my dream of becoming a mom is about to come true.
Throughout childhood, I was prone to syncope (fainting), but my doctors thought it was benign. Then around 2003, I began experiencing odd workout fatigue, dizzy spells, a slowed heart rate, and frequent loss of consciousness when walking or running—particularly on hills.
Three years of doctor visits and tests finally led me to the doorstep of Dr. Barry Maron, then-Director of the Hypertrophic Cardiomyopathy Center at the Minneapolis Heart Institute Foundation, who readily diagnosed me with HCM in 2006. He listened, and gave me choices—realizing how important it was for me, then 27, to remain active and live a fully engaged life.
Two weeks later, due to the severity of my symptoms and condition, he surgically implanted a dual-function ICD
—a battery-powered defibrillator to monitor and electrically shock a rapid or wild heart rate into regular rhythm, with a pacemaker mode to stimulate a too-slow heartbeat back to normal. It sounds intense, but honestly, I don’t even know it’s there.
Because I lived in Connecticut, Dr. Barry Maron sent me to his son, Dr. Marty Maron, Director of Tufts MC’s HCM Center, for a 2007 follow-up visit. Their communication ensured my seamless care transition.
To Parent or not to Parent
My husband and I soon moved to Chicago, where I frequented another HCM Center of Excellence. We both really wanted children, and though I enjoyed my Chicago doctors, the care didn’t compare to that of the Drs. Maron. I often called them for guidance as we considered HCM’s impact on parenthood, and traveled to visit Dr. Barry Maron several times.
As I hadn’t experienced any cardiac events for quite some time, all of my doctors were open to the idea of pregnancy. I met with a geneticist who told me I carried the mother lode of HCM genes—meaning high odds our baby would have HCM. Deflated, my husband and I struggled to determine the “right” decision. I consulted with several other women’s cardiologists—none of whom knew what to tell me. And then, one day, my heart erupted in an electrical storm, with my defibrillator firing several times. Somebody was telling me this was not the time to get pregnant.
Around late 2012, my HCM advanced to heart failure. I was losing ground. Desperate to feel better, I visited Tufts MC for a full day of testing while home for Thanksgiving. Disappointing results led Dr. Marty Maron to establish an annual heart transplant workup—I had to be closely watched. Together, he, Noreen and I decided my best step for optimum care would be to move back to Connecticut to be near family and Tufts MC.
The Tipping Point
If I was ever to fulfill my dream of becoming a mom, Dr. Maron and Noreen helped me understand it was time to really take care of myself. In Chicago, I had opened a new small business for a dietetic practice, and the stress of overseeing all facets of this venture was clearly taking its toll. Returning to Connecticut, I scaled way back on my hours (working only from home), began attending regular yoga and meditation classes, got really into cooking, and spent more time with family. As someone who naturally gravitates toward overachievement, these changes felt selfish…until I reminded myself: I was the leader of my health care team, and if I was ever to have a baby, slowing down was not an option, but a necessity.
And that turned the tide. Every year since 2012, my health has improved dramatically. The need for heart transplant consults vanished. Dr. Maron gave me the green light to start a family. Soon, my husband and I were thrilled to announce our successful pregnancy.
I feel incredible today—better than I have in seven years. I went from truly considering a heart transplant (struggling with eating, energy, walking, and summiting even the smallest flight of stairs) to effortlessly enjoying daily walks, regular yoga, tackling a modified work load, dabbling in culinary arts, and spending time with my husband and family.
Since becoming pregnant, I see Dr. Maron and Noreen every trimester, which I LOVE—I would gladly drive two hours to see them anytime—and two or three annual visits to my local cardiologist.
Pregnancy with HCM
Amazingly, pregnancy has improved some of my HCM symptoms—increasing my blood volume and thereby, my energy levels. Dr. Ethan Rowin
, Co-Director of Tufts MC’s HCM Center, told me a lot of pregnant HCM patients experience this benefit.
Though I’m being overseen by a high-risk obstetric team, given my HCM, my delivery shouldn’t be any more unique than the average woman’s. As a precaution, because of my dual-function ICD and history of passing out, we’re developing a few birth plans for vaginal and Cesarean delivery. But otherwise, it’s all about close communication between my various teams, and regular prenatal care. I feel so…normal!
Tufts MC’s 360-degree HCM experience has truly given me the gift and freedom of a fully engaged life—I still can’t believe I’m starting a family. From Dr. Barry Maron (it’s awesome he’s at Tufts MC now), to Dr. Marty Maron, Dr. Rowin, and Noreen...without fail, all my questions are answered, my concerns addressed with sincerity, and I’m given thoughtful choices to participate in my long-term wellness. This team is every family’s dream.