On July 9, 2016, Erin Avery picked up her 6-week-old newborn and settled back into bed where she could nurse her more comfortably. She was in the thick of those exhausting newborn days, and in need of a few quiet moments to rest her eyes.
But she never woke up again.
Erin was only 31 years old when she passed away suddenly, leaving behind her 6-week-old baby girl, 3- and 5-year-old boys, a loving husband, and many other grieving family and friends who were all left to wonder the same question: Why?
She was also a friend of mine — we’d bonded years earlier in a Facebook group for new moms, after learning our children were both due the same month. While I mostly knew her online, I did meet her in person once at a park in Raleigh, North Carolina, where we enjoyed a hot summer day with our kids. She took a selfie with her phone that day of the two of us, but looking back, I regret not asking her to send it to me, too — to have it for my own memories, now that she’s gone.
At the time of her death last summer, no one knew why Erin suddenly passed away. Our birth group followed her family’s updates closely — each one of us in shock because she was so young. It could have been any one of us.
Mostly though, our hearts shattered for the three young children Erin left behind. Her community gathered around them quickly to donate breast milk for her 6-week-old that had been exclusively breastfed by her loving mama. Friends and family went out of their way to love on her boys and help Erin’s husband any which way they could through various donations, like school supplies or Christmas gifts.
Weeks later, Erin’s autopsy would reveal the truth: She’d passed away from peripartum cardiomyopathy (PPCM) — pregnancy-induced heart failure. And while we were all glad to finally have an answer, no one actually knew what that answer really meant. In fact, even her doctor missed diagnosing this when Erin came in with all the symptoms.
“Doctors need to remember the baby is not the only patient they need to be concerned with and they need to know about PPC,” Erin’s mother, Tammy Eversole, recently told me. “It’s shocking because it’s so unexpected. You go from relief that they had a healthy baby to absolute denial that you could lose an otherwise healthy mom.”
In the year since Erin’s death, Tammy has made it her mission to educate others about PPCM however she can, in the hopes that spreading awareness about this preventable cause of death will save the lives of other new moms, just like Erin.
The family has also been connected with Dr. James Fett, a leading expert on PPCM who has worked tirelessly over the last 20 years to spread awareness of the condition and published more than five dozen medical journals detailing his findings. Through his research, Dr. Fett even created a self-test for pregnant women, to identify their symptoms and know when they should reach out to a doctor, which is critical for early diagnosis.
“Everyone involved should know that even a previously healthy young woman can experience heart failure related to pregnancy,” Dr. Fett shares. “It is not hard to diagnose PPCM. The diagnosis is going to come when the echocardiogram is done.”
According to the American Heart Association, PPCM occurs when the heart enlarges to the point where it becomes too difficult for it to keep up with blood supply throughout the body. And although it’s rare in the U.S. and Canada, it affects between 1,000-3,000 women each year.
The symptoms include one or more of the following:
• Feeling tired
• Heart palpitations
• Swelling of ankles
• Chest or abdominal pain
• Shortness of breath when lying down
• Difficulty breathing with activity
• Unexplained cough
• Swollen neck veins
• Low or high blood pressure
• Excessive weight gain
See how easily it could be missed? I don’t know a single new mama out there who doesn’t have at least one of these symptoms, either in the late stages of pregnancy or those first weeks with a newborn. It’s no wonder then that far too often, they’re are dismissed as normal pregnancy and postpartum symptoms. Sadly, many moms aren’t diagnosed until after a cardiac arrest happens, or as with Erin, after they’ve passed away.
But although it can be a silent killer, the good news is that PPCM is totally preventable and even treatable if it’s correctly diagnosed early. There are several blood tests available, and undergoing an echocardiogram (an ultrasound of the heart) can quickly diagnose PPCM before delivery in 95 percent of cases, which helps to prevent further issues and make treatment more successful. The problem is, the preventions and treatments only work if doctors are aware of a new mother’s symptoms — and with so little awareness surrounding PPCM, it’s an important reminder that moms need to speak up about any health symptoms they may be facing, in order to be their own health advocates.
It’s now been a year after Erin’s death, and I’m happy to share that her kids are now thriving, thanks to the family and friends that have surrounded them with love and support. Her daughter Scarlett, who’s now a year old, even looks nearly identical to her mommy.
In the meantime, Erin’s friends have kept her memory alive by continuing to raise awareness about the condition that took her life. One friend even created t-shirts for PPCM — 90 percent of the proceeds go directly to Erin’s children and 10 percent towards a charity of the family’s choosing.
Because the key to saving more lives is to educate every single new mom out there of what Erin didn’t know. No family should ever have to suffer the heartbreak that the Averys have this last year; and no mother should have to miss out on the rest of her children’s lives.
To learn more about PPCM or read more stories just like Erin’s, visit My Heart Sisters.