Part 2 of Lindsay’s story follows her journey from PPCM diagnosis to the creation of the PPCMFund. If you haven’t read part 1 of Lindsay’s story, make sure to check it out to learn about her entire journey.

With my baby crying for me just steps away, the paramedics burst into the room. They couldn’t find a heartbeat but my son’s wails for his mother spurred them to keep trying. Using the paddles, the paramedics were able to find a heartbeat but my heart continuously kept stopping. They weren’t, however, going to let this tiny baby lose his mom and continued to work on me. When I was stable, they flew me to the hospital. Upon arrival, my heart stopped one final time which led them to freeze my body into a hypothermia coma.

It wasn’t my time.

Over several weeks, they would remove over 50lbs. of fluid and infection from my body. Once stable, they used 12 heating pads to warm the popsicle I had become. Days later I woke up to a nurse welcoming me back to the living. They hadn’t thought I would make it, leaving them astonished when I did finally open my eyes. When I was finally awake enough to finally understand what the medical team in Arizona was telling me, I learned of the courageous battle my body had fought.

Three cardiac arrests.

Pronounced dead three times.

Hypothermia coma.

The culprit? A preventable condition I had not even heard of until given my graveyard diagnosis – peripartum cardiomyopathy.

They called me a medical phenomenon, a miracle. How was I still alive and of sound mind after my heart stopped for over 30 minutes during each cardiac arrest? I should be braindead. I should be completely dead. Luckily I had the Banner Estrella Medical Center team in Phoenix, Arizona. They had an awareness of this condition and were able to properly care for me. The hospital educated me on my condition and I learned I could have had a diagnosis as early as 10 weeks pregnant. Preventions and treatments that should be mandatory could have saved me from almost dying.

My health battles, however, were not over. While hospitalized, a defibrillator had been implanted to help assist my heart. This device soon started to slowly kill me. After 18 months with the device, I started experiencing symptoms of an allergic reaction. Luckily my current cardiologist, Dr. Karol Watson of UCLA, was able to successfully remove this device on February 14, 2018. I later found out that the team that had implanted the device had failed to complete a patch test to check for this type of reaction. After getting the defibrillator removed, it was discovered I had an allergy to the metal and 11 of its components. My wounds have wisdom.

I fought hard to be heard both before and after my pregnancy. Continuously, however, my concerns remained ignored. PPCM, this silent killer, had come for me but I had made it through and now had a new purpose.

Upon returning back to the hospital where I had my son, the birthing professionals showed no compassion for my condition. The doctor who delivered my son literally said I just got “the bad luck of the draw getting PPCM”. The true bad luck that I had, however, was my birth team having no awareness of PPCM. One of the best hospitals in the United States couldn’t properly diagnose let alone treat peripartum cardiomyopathy. What hope is there for any pregnant woman?

When will they listen to and respect the concerns of pregnant women? Will we ever be seen as more than vessels for life? Does a mother’s life not matter?

I am now on a mission to help spread awareness about peripartum cardiomyopathy both in the medical community and to the general public. With this, I have created the PPCMFund. This organization will not just spread awareness about PPCM but also provides financial support to women suffering from this condition. I strive for change in the birthing wheelhouse through my foundation and by sharing my heart survival story.

Lindsay’s Mission & Prevention Project for Maternal Mortality Awareness

“Awareness Day Is Everyday”

PPCM Fund Inc. is a 501 C3 nonprofit organization founded by Lindsay Staloff-Peterson, a peripartum cardiomyopathy survivor. Lindsay is dedicated to saving expectant mothers and their families from the preventable catastrophe that is peripartum cardiomyopathy – pregnancy-induced heart failure,  a condition that is relatively unknown to new mothers and, unfortunately, to many medical professionals as well.

We believe that it is vital to implement systems, spread awareness, and conduct further research to help aid in the prevention of maternal mortality and morbidities from peripartum cardiomyopathy (PPCM). In addition, we strive to provide support to the families deeply affected as a result of PPCM. We believe that by spreading awareness, we will save lives. With the opportunity for early diagnosis and treatment as early as 10 weeks pregnant, the NT-Pro BNP test should become a standard procedure in prenatal care. This simple, low-cost test is the solution to reducing the cases of maternal morbidities and mortalities related to PPCM. We can save lives.

Learn more about the prevention project at PPCMfund.com. 

Would you like to share your Heart Story? Visit Share Your Heart Story for more details.

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