Stephanie Rawson: Functional Mitral Regurgitation

Most little girls have big dreams and wishes. Six-year-old Claire is no exception, but the selfless nature of her biggest wish is. She wants to be a doctor for just ONE day in order to do a single, but very important surgery – one that will fix her mom’s heart. The wish brings tears to the eyes of her mom, Stephanie Rawson, who has heart failure and functional mitral regurgitation (FMR). “I just want to be able to do more things with my daughter and be the mom I want to be,” she said.

Thanks to a new investigational heart valve procedure being studied at the Minneapolis Heart Institute Foundation® (MHIF), Stephanie, 35, has more hope of seeing her wish come true than she’s had in several years. In January 2018, the Twin Lakes, Wisc. woman became only the 19th patient in the world, and the first through MHIF, approved to undergo surgery for Ancora Heart, Inc.’s AccuCinch® Ventriculoplasty System. Led by research cardiologist Dr. Paul Sorajja, MHIF is one of only eight leading heart centers studying the system, which offers a minimally invasive treatment option for the millions of heart failure and FMR patients who are unlikely to survive the risks of open-heart surgery.

Heart failure is a condition in which the heart’s muscle cells weaken and lose their ability to pump enough oxygen-rich blood to the body. This heart muscle weakness leads to enlargement of the main pumping chamber (left ventricle), which in turn stretches the mitral valve causing it to malfunction allowing blood to flow backwards into the left atrium. This is commonly referred to as FMR and leads to further deterioration of heart function. Nearly 75 percent of patients with heart failure also suffer from FMR.

Like many patients, Stephanie’s journey to ultimately receiving the potentially life-saving treatment was not without several bumps and roadblocks along the way. Her struggle with heart failure began shortly after Claire’s birth in March 2011, when she developed the condition due to an unknown cause. She initially felt that her symptoms — being extremely short of breath and feeling lightheaded — were related to being postpartum, but became increasingly concerned after they lingered. In part due to her young age, doctors didn’t suspect heart failure, instead diagnosing her with anxiety and asthma. Finally, in June 2012, the correct diagnosis was established.

Over the years, Stephanie’s heart failure was treated with medication and she experienced a brief period where her condition was stable. However, it eventually worsened and caused her to be hospitalized frequently; her heart’s left ventricle had massively enlarged. Unfortunately, this not only caused her heart’s mitral valve to stretch; it stretched the opening so large that it made her ineligible for a research study involving a different type of transcatheter valve repair procedure. At one point, Stephanie was devastated upon hearing from a team of doctors that there was nothing else they could do.

Thankfully, her thoughtful and determined cardiologist in Milwaukee had previously worked with Dr. Sorajja and knew of his research work with MHIF. Consulting as a team with another of Stephanie’s doctors, the trio reviewed her test results and determined she would be a good candidate for the AccuCinch study. During the procedure, a catheter is guided through the aortic valve to implant the AccuCinch device in the heart wall. Next, a series of anchors are implanted in the left ventricle below the mitral valve; a cable connects the anchors and is cinched in place. Once cinched, the system is designed to reduce the size of the left ventricle and reshape it so that the heart wall can strengthen and help alleviate symptoms of heart failure and FMR.

Within 30 days of the surgery, Dr. Sorajja noted that Stephanie’s left ventricle had indeed reduced in size, and that her valve opening had narrowed. This is good news, because it means she would now likely be an eligible candidate for a transcatheter mitral valve repair with a mitral clip.

While early in her recovery, Stephanie is cautiously optimistic about her ability to live a more normal life. She lives on the third floor of her building, which has 24 stairs between the parking lot and her front door. In the past, she has typically needed to stop on the landing to catch her breath, but post-surgery, she can now do the entire flight without stopping.

As for her daughter Claire, she isn’t stopping in her quest to help find a cure for her mom, either. She recently was the top fundraiser for her school’s Jump Rope for Heart fundraiser for the American Heart Association, raising an impressive $1,300. And like her young daughter, Stephanie herself is selfless about her wishes. When asked how she feels about participating in research, she said, “I feel like I’m doing something good for other people, not just myself, and if participating in research has the potential to help, it’s worth it.”