Heart-Disease-In-Young-Women_500At 33 years of age, Shayna Robinson suffered cardiac arrest. In other words, her heart stopped pumping blood. A private-practice physical therapist, Robinson was working with a client one January morning two years ago when she suddenly dropped to the floor unconscious.

Robinson’s story might have ended there. People experiencing an “out of hospital” cardiac arrest have a 5 percent chance of survival. The likelihood of avoiding brain damage is even smaller.

But luck, location and a quick response from her client, Barbara, were on her side. When Robinson collapsed, Barbara immediately began chest compressions and continued for 12 1/2 minutes until the paramedics of the Chicago Fire Department — just two blocks away — arrived. They shocked Robinson’s heart three times before getting a faint beat. Transported two blocks further to Northwestern Memorial Hospital, she was placed in a medically-induced coma while a team of doctors led by Susan Kim, MD, director of the Cardiac Implantable Electronic Devices Clinic and associate professor of Medicine in the Division of Cardiology, swung into action.

“They did every possible test they could on me and didn’t find anything — no structural abnormalities in my heart or risk factors,” says Robinson, “I wasn’t of a certain age or overweight, and I wasn’t doing drugs.” What the medical team did know is that she had experienced a ventricular tachyarrhythmia: Her heart had suddenly gone into a rapid, life-threatening rhythm. The team recommended implanting a cardioverter defibrillator to avoid another cardiac arrest.

Healthy and fit, Robinson went into cardiac arrest at age 33.

Healthy and fit, Robinson went into cardiac arrest at age 33.

“I thought about it for about two minutes before agreeing,” she says laughing. “My doctors were telling me that I went into ventricular arrhythmia once and died for 12 1/2 minutes. The chance of this happening again was high. If it happened again, my chances of living were even lower, because how lucky can you get more than once?!”

Robinson gives high marks to her doctors and nurses. They provided excellent care and showed great patience in explaining her situation over and over again because of her initial short-term memory problems. “It’s no wonder that Northwestern Memorial is one of the best hospitals in the nation,” she says. “The cardiovascular team is also honored in that way.”

When the time came to diagnose exactly why Robinson’s heart had stopped, she underwent an electrophysiology study. The results revealed arrhythmogenic right ventricular cardiomyopathy. “It’s a genetic mutation that causes dead zones in your heart so certain areas won’t electrify,” she explains. “They start out small and as you get older these abnormal rhythms get stronger. These abnormalities become more and more incongruent until you go into an arrest.

Purposeful Partnering

“…I have this further purpose now. It (the cardiac arrest) was a gift really,” continues Robinson. “More than just life, I have the ability to talk to people, especially younger people, about what they should look for — the little signs and symptoms — that I didn’t know at the time but now, in retrospect, I see that I had signs and symptoms.”

Robinson recalls fainting spells and dizziness, feeling shaky and sweaty, and poor circulation in her hands and toes. She just didn’t pay attention because of her youth, excellent physical condition and absence of risk factors like diabetes or high blood pressure.

She has formed her own nonprofit organization, Heartability (heartability.org), to advance her mission and support. She is passionate about advocating for and educating young women about living heart healthy.

Seeking a way to tell her story to a larger audience, Robinson sought the guidance of Marla Mendelson, MD, ’88 GME. As director of the Bluhm Cardiovascular Institute’s Women’s Cardiovascular Health Program, Mendelson devotes her time to the heart health of women of all ages. In fact, it is the program’s focus on a wide age range that distinguishes it from all others.

The program started 10 years ago. Its mission? To provide clinical care to women with cardiovascular disease, educate both clinical peers and the community about recognizing and preventing heart problems and foster cutting-edge research. It grew out of Northwestern’s Heart Disease and Pregnancy Program, which Mendelson, associate professor of Medicine in the Division of Cardiology and of Pediatrics in the Division of Genetics, Birth Defects and Metabolism, founded while completing her fellowship. She continues to run the program.

Susan Kim, MD, (left) director of the Cardiac Implantable Electronic Devices Clinic and Marla Mendelson, MD, '88 GME, director of Women's Cardiovascular Health Program at the Bluhm Cardiovascular Institute

Susan Kim, MD, (left) director of the Cardiac Implantable Electronic Devices Clinic and Marla Mendelson, MD, ’88 GME, director of Women’s Cardiovascular Health Program at the Bluhm Cardiovascular Institute

Eager to join forces, Mendelson invited Robinson to speak about her experience and organization at the program’s symposium in May for medical professionals and the community. In addition, a support group for young women with cardiovascular problems is being discussed by the pair, as is including a link to Heartability on the program’s  website. Robinson also envisions visits to high schools and colleges to educate young women. With an undergraduate degree in biological sciences, and master’s and PhD degrees in physical therapy, she understands the science of her cardiac experience and can well explain heart disease to other young women. She also has plenty of empathy and encouragement to give.

Youth No Protection

Awareness and prevention are the key words when discussing young women and heart health.

According to the American Heart Association, the number one myth about heart disease is that it doesn’t affect young people. One in three Americans has cardiovascular disease. With the increasing prevalence of risk factors such as obesity and Type 2 diabetes, heart problems are becoming more common at a younger age.

Mendelson often sees the beginnings of later heart problems in many young pregnant women. She alerts them to pay attention to indicators such as high blood pressure during pregnancy when pressure typically should be low. Pregnancy is a good time to catch these indicators. Usually expectant moms are getting medical care and concerned about their health — a situation that often falls by the wayside for the next 20 years, allowing early symptoms to become full blown organ damage.

Being an advocate for your own health is also important in matters of the heart. Young women may need to insist that their doctors investigate symptoms that may be passed over because of age and lack of risk factors. Mendelson notes that sometimes doctors are too quick to dismiss symptoms in young women. “In the past when women have gone to the doctor for palpitations, doctors haven’t taken them seriously,” she says. “They blame it on diet pills…or anxiety. I think everyone deserves to have every possibility looked into.”

In fact, she recalls a patient with palpitations who had been diagnosed with mitral valve prolapse. “That’s a very common diagnosis in women, and she was told that it was no big deal,” says Mendelson. As it turned out, Mendelson discovered that the woman had been suffering an irregular heart rhythm for years, which could have been diagnosed with a six-second electrocardiogram.

“I’m not an advocate for doing every test on every person, but we can’t ignore things either,” she says. “People tend to know their own bodies. You can only say everything is okay after you’ve done the heavy lifting.”

Mendelson points out that young women with heart problems do not have to be defined by them, and Robinson has taken that advice to heart. “You can’t be afraid of life,” she says. “I wasn’t before this experience, and I’m still not. Life has to move on. I could sit in a corner, but what fun would that be?”


At the Heart of Things

Northwestern Memorial not only helped to save Shayna Robinson’s life, but it also served as the backdrop for the love story that developed within its walls.

When Robinson awoke from her medically-induced coma, she saw her boyfriend of three months, Joshua, next to her bed. He met her family for the first time in her hospital room and the couple said, “I love you” for the first time there, too.

A fitting happy ending and a new beginning for Shayna Robinson

A fitting happy ending and a new beginning for Shayna Robinson

On the one-year anniversary of Robinson’s cardiac arrest, she and Joshua were married in Northwestern Memorial’s chapel among family and friends. The doorman from the building where Robinson suffered cardiac arrest, who was the first to call 911 on that fateful day, also is an ordained minister. He presided over Robinson’s wedding ceremony.

And a new little heart is now beating. The couple is expecting a baby.