What Every Pregnant and New Mom Needs to Know About PPCM

As a new mom, often the last thing we are thinking about is our own health. We can get so wrapped up in the health of our baby (Are they pooping enough? Are they gaining enough? Is that umbilical stump normal?) that we may forget to look over our own care. We might dismiss symptoms that are uncomfortable or odd, thinking they’re just part of the package of pregnancy and the postpartum time.

If you are due soon or recently had a baby, this is actually a prime time to be aware of your own health– because if not, it could cost you your life.

Sadly, I’ve seen it happen firsthand.

Last year, my friend Erin suddenly passed away at just six weeks postpartum. She left behind her infant daughter, along with her three- and five-year-old boys. Her death was such a shock to all who knew her, as she was otherwise a healthy young mom who loved her children fiercely, and was known for her passion for sewing amazing creations. Now, Erin’s family wants others to know about her story and to learn the signs of the condition that took her life in order to save the lives of other moms.

The condition that took Erin’s life is called PPCM (Peripartum Cardiomyopathy). According to the American Heart Association, it is a form of pregnancy-induced heart failure, and symptoms tend to appear in the last month of pregnancy and the first five months postpartum. It can happen to previously heart-healthy women and pregnancies. While uncommon in the USA compared to other parts of the world, it is estimated that 1,000 to 1,300 women develop this condition each year, and it’s one of the leading causes of maternal death.

The tricky thing is that the signs can mimic other third trimester pregnancy symptoms.

What are the symptoms to watch for?

  • Swelling in the legs, ankles, or feet
  • Heart palpitations
  • Chest pain
  • Abnormal blood pressure (low or high)
  • Shortness of breath, especially when lying flat or with activity
  • Enlarged neck veins
  • Exhaustion
  • Excess weight gain
  • Unexplained cough
  • Feeling light headed

Hold up though, momma! Before you start worrying, know that PPCM is a treatable issue when caught early on. That’s why these signs are important to know. The test for PPCM are simple to do, the first step being a self screening quiz at home. From there, consult a doctor for an evaluation. Your doctor can then make a diagnosis with blood work and an echocardiogram, which is an ultrasound of the heart that looks for enlargement. Cases of PPCM have been successfully diagnosed in 95% of cases, and treatment with medication and diet have proven to be effective when caught early.

According to her family, Erin talked to the doctor about other postpartum issues and discussed some of signs listed above. However, her concerns were dismissed as something that could wait. Her providers planned to look into her symptoms more at her approaching six-week visit, but by then it was too late. She passed away two days before her appointment.

PPCM isn’t widely known yet, even by some medical professionals, which is all the more reason to be advocates for our own health. I have had six pregnancies, but I hadn’t heard of PPCM until Erin’s cause of death was discovered. Finding out about this condition has certainly brought a new awareness, both for myself after my recent birth, as well as for other mom friends around me.

Dr. James Fett, who has worked extensively over the last 25 years to study and spread awareness of this pregnancy and postpartum condition, believes if care providers are knowledgeable about PPCM and perform echocardiograms when symptoms arise, then many more lives could be saved. An early diagnosis is key to successful treatment.

My Heart Sisters also aims to spread awareness so less lives are claimed by PPCM. You can visit their website for more PPCM information, the self screening heart failure tool, stories of survival, as well as a pamphlet to share with your provider if they haven’t heard about it.

The bottom line is, when we aren’t feeling our best, we need to discuss it with our care provider to make sure there isn’t an underlying cause. We also need to  trust our gut when something feels awry and insist for tests to be done. Every pregnant and new mom needs to be armed with this information so we can be here to raise our little ones! As Erin’s family is sadly experiencing in the aftermath of her loss, simply having awareness of the condition can be a lifesaver.

Let’s work together to keep the PPCM awareness going so this “silent killer” isn’t silent any longer, and more lives can be spared.

Leah became a mom at 19 years old and standing short at 4 foot 11, she is now a mother of almost 5 and a birth mother in an open adoption. Not letting age or size stop her, she's conquering her dreams while being surrounded with yogurt smeared walls and mountains of laundry. You can find more from Leah on her blog, The Grace Bond.

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