There’s a good chance you have never heard of PPCM, peripartum cardiomyopathy. I only found out about it after my friend Lindsay Staloff suffered three cardiac arrests and now counts herself as a member of the 1% survivor group of this rare condition when not diagnosed properly. Roughly about a thousand moms a year around the globe get peripartum cardiomyopathy during pregnancy or develop it a short time after giving birth.
Peripartum cardiomyopathy is a weakness of the heart muscle that may begin during the final month of pregnancy through about five months after delivery. It is rare, mostly happens after delivery of the baby and can produce mild or severe symptoms. There is no real known cause. In a mild case you will experience lightly swollen feet and legs and shortness of breath. In a severe case the mom becomes very short of breath, experiences heart flutters and has swollen feet even well after delivery. This happens because the heart is weak and doesn’t pump well. Fluid then accumulates in the body, most noticeably in the lungs and the feet. As shortness of breath and swelling are nothing new to moms in their third trimester cardiomyopathy can go undiagnosed easily. As the goal in treating peripartum cardiomyopathy is to keep/drain fluid from accumulating in the lungs and to help the heart recover, a non-diagnosis is highly fatal. This is what happened to Lindsay.
Her son Liam was born August 18th, 2016 and three months later she coded three times and nearly died. Before she got pregnant, Lindsay was a perfectly healthy woman who exercised regularly, didn’t smoke or drink, had no prior heart condition and never even came down with the flu.
What went wrong? Lindsay had all the symptoms mentioned above but unfortunately none of her doctors at a prestigious Beverly Hills hospital properly tested her during pregnancy and after birth for cardiomyopathy nor did they listen to her when she complained that something wasn’t right. The system failed her. She was diagnosed with gestational diabetes & preeclampsia five months into her pregnancy, she was bloated and swollen. The swelling did not subside after birth but got worse.
Finally mid-November she called her OBGYN and asked to be seen immediately but was told they were booked and if it was an emergency to go to the ER. Her doctor told her “she got the bad luck of the draw” after Lindsay told her she was not feeling well. At this point she had not been able to keep food or water down, had the cold shakes, and a temperature of around 103.8 to104.2.
Lindsay was slowly dying and asking for help but no one answered the call for help. Instead of a wellness check up and getting an EKG Lindsay was sent to the emergency room at Cedars Sinai where they again mis-diagnosed her and released her from the hospital with 103.8 temperature and a 2400 high white blood cell count. She was told “she will be fine and to have a nice Thanksgiving”. Less then 72 hours later she knocked on death’s door three times while visiting her in-laws in Arizona and to the surprise of all the doctors tending to her at the hospital, she survived. They had to lower her body temperature to preserve her brain function and drain almost 40 pounds of suffocating toxic fluid from her body. After suffering three cardiac arrests she had to have a defibrillator implanted and now has a wire going through her heart. Not only is the hockey puck size defibrillator painful, unsightly and uncomfortable but it bares a high risk of infection and other medical issues. She is not out of the woods yet.
99% of women do not survive PPCM if it is not caught in time. Maybe Lindsay’s story and her zest for survival can be the force to change the way doctors treat pregnant women and change the way they receive after-birth care. It is not only mothers who are ill-informed about PPCM but many health care professionals as well. Women need to have wellness check-ups after birth. Echocardiograms, EKG’s, should be mandatory. It takes two minutes and can save a mom’s life. It is nearly impossible to detect PPCM without an EKG and it can mean the difference between life and death. A tragedy can easily be prevented.
Most women in Lindsay’s shoes do not survive and come back to see their child grow up.
If it happened to her, it can happen to you.
It is Lindsay’s mission to make women aware of PPCM, raise money for survivors and children of survivors, and create a screening protocol to be made available and mandatory in hospitals around the world. Every mother deserves a life with their child.
www.rollplaybaby.com proceeds donated to PPCM awareness and survivors
Lindsay before pregnancy – Lindsay after giving birth in August – Lindsay in November one day prior to having three cardiac arrests.