Living with Marfan Syndrome, Marcy’s Journey After Aortic Dissection

When Marcy Lagarde, 42, of Raymore, Missouri, felt sudden excruciating pain in her left arm and had trouble lying down she

 knew something wasn't right. Marcy has Marfan syndrome, a genetic condition that weakens the body's connective tissue. Because she has been under the care of Alan Braverman, MD, a WashU Medicine cardiologist at Barnes-Jewish Hospital and world-leading expert in Marfan syndrome, she knew that the condition put her at an increased risk for cardiovascular issues—but she never expected to face one so suddenly. 

Because this was an emergency, Marcy rushed to her local hospital, where doctors diagnosed her with an aortic dissection, a tear in the main artery that carries blood from the heart. While anyone can experience an aortic dissection, Marcy was at a much higher risk. She needed an immediate transfer to Barnes-Jewish, a four-hour ambulance ride away. In addition to Dr. Braverman's expertise, Marcy would also receive care from a nationally recognized team of WashU Medicine heart and vascular specialists and the advanced surgical techniques her condition required.

“I didn’t realize how serious it was,” Marcy says. “But when I got to Barnes-Jewish, I was immediately surrounded by a caring and dedicated team of nurses and doctors. The communication was wonderful, and I knew I was in the best place.”

WashU Medicine specialists at Barnes-Jewish worked quickly to assess Marcy and begin treatment, ensuring she received immediate, coordinated care. 

Rare and dangerous condition

Marfan syndrome affects about 1 in 5,000 people and is caused by a mutation in the FBN1 gene that weakens connective tissue throughout the body. One of the greatest risks is enlargement of the aorta.

“Marfan syndrome creates abnormal elastic fibers in the aortic wall,” Dr. Braverman says. “The tissue is like an overstretched rubber band. Over time it loses its strength, and if it tears, the result can be fatal.” 

Dr. Braverman leads the Marfan Syndrome and Aortopathy Center, part of the WashU Medicine and Barnes-Jewish Heart & Vascular Center, and one of the nation's largest clinics focused on Marfan syndrome. The center provides comprehensive, multidisciplinary care for those with Marfan syndrome and other inherited aortic conditions. He also serves on the board of the Marfan Foundation to assist emergency medicine physicians in recognizing the subtle early signs of Marfan syndrome. Those include disproportionately long arms and legs, elongated fingers, and a tall frame.

WashU Medicine and Barnes-Jewish Hospital are recognized nationally for their expertise in aortic dissections, aneurysms, and genetic aortic conditions such as Marfan syndrome. Together, they work closely with the Marfan Foundation to advance research and support patients across the country with access to the latest technology and surgical techniques.  

Marcy, who has been followed by Dr. Braverman for many years, understands the risks that come with having the condition. 

That risk became reality for Marcy, who experienced a rare and complex descending aortic dissection, a tear in the inner lining of the aorta that allows blood to flow between layers of the vessel wall. This can restrict blood flow to organs or legs in the early phase, and over time can cause weakness that leads to a dangerous bulge in the wall of a blood vessel, known as an aneurysm.

Meeting complexity with expertise

Because of the extent of her dissection and her underlying genetic condition, Marcy required a series of procedures. The goal was not only to replace her diseased aorta, but also to protect the blood supply to her spine, since paralysis is one of the most serious potential risks of this kind of surgery. 

A multidisciplinary team led by WashU Medicine vascular surgeons Luis Sanchez, MD, and J. Westley Ohman, MD, and WashU Medicine cardiothoracic surgeon Puja Kachroo, MD, performed an extensive and complex procedure to replace Marcy’s entire aorta from her chest through most of her abdomen with a surgical graft, a specially designed tube that replaces the weakened part of her aorta and restores normal blood flow.

“Marcy’s case was unique because of the complexity of the surgery combined with her age and weakened tissue,” Dr. Ohman says. “Our team reviewed imaging, discussed strategies, and coordinated among multiple specialists. Protecting her spine was critical, and part of that was rerouting blood flow preparing her for the next procedure to replace her aorta. It was a combination of precise planning, advanced surgical techniques, and a dedicated team.”

“This is a very complex surgery,” Dr. Braverman says. “It takes many specialists, working in perfect coordination, to achieve the best possible outcome. We are one of the few programs in the nation that has the expertise to manage cases like Marcy’s.”

“That level of teamwork is what defines WashU Medicine and Barnes-Jewish,” continues Dr. Ohman. “For any organ system that could have been affected during Marcy’s surgery, we have the experts ready. From cardiac and vascular surgery to kidney and liver support, every WashU Medicine specialist played a role in helping Marcy achieve a successful outcome in one of the most complex operations we perform.”

A grateful patient, a renewed life

Marcy’s recovery exceeded expectations. After weeks in the hospital, Marcy regained her strength and returned home to her family, a testament to both her resilience and her care team’s expertise. 

Marcy was overwhelmed with gratitude. “The WashU Medicine doctors and nurses at Barnes-Jewish were amazing. Everyone was so nice. They saved my life, I feel wonderful, and I am extremely grateful for the compassionate care and advanced medical expertise that make WashU Medicine and Barnes-Jewish truly exceptional.”

“Marcy is full of life, bubbly, and energetic,” Dr. Ohman says. “There’s a brightness to her, a strength and spirit that everyone feels. Walking into her clinic room one month after the procedure, seeing her stand up, hug me, and have made an exceptional recovery, that’s a moment I will never forget. Seeing patients like Marcy recover so well, it means everything. That’s exactly why we do this work.”

Marcy follows up annually with Dr. Braverman to monitor her condition. With the help of her care team, she is able to live a full and active life. 

“Patients with Marfan syndrome are some of the strongest individuals I’ve encountered,” Dr. Braverman says. “They have a will to survive, they advocate for themselves, and they recognize excellence.” Marcy was one of those patients, Dr. Braverman says. "She is strong, engaged, and was determined to recover. Her attitude and our team's coordinated care are what brought her through an incredibly complex surgery. That's why patients travel here: We have the expertise to help them."

To schedule an appointment with a WashU Medicine cardiologist, call 314-362-1291 or read more about aorta diseases.