When you read about what to expect from childbirth, some things are left out — sometimes due to their rarity, and sometimes because a lack of known information. Peripartum Cardiomyopathy is one such condition, and a deadly one at that. I know, firsthand, as it touched our family and stole my niece–a beautiful young mother with the world in front of her and her precious son.
My niece, Kayla, turned 22 at the beginning of June of 2017. In February, she’d delivered her son, under emergency conditions, as they were both suffering from severe effects of hemolysis, elevated liver enzymes, low platelet count (HELLP) syndrome. The doctors told my sister they didn’t believe they could save one, much less both of them, and they were weighing the odds for whom had a better chance of survival. In a moment of surreality, I had to counsel my sister from miles away–help her bring clarity to her thoughts and process what the doctors at Duke University were telling her.
Miraculously, at just 27 weeks, my niece safely delivered her beautiful, barely two-pound baby boy — they both survived. Doctors repeatedly told both my sister and my niece what a miracle it was. We held our breaths for four long months as little baby Camden grew in NICU. We couldn’t believe how frail he was, and the journey through NICU was one that put my sister and her baby, Kayla, in uncharted territory.
During those four months, Kayla was diagnosed with Postpartum Depression and Post Traumatic Stress Disorder (PTSD) from birth trauma. She struggled every day to recover from the physical trauma of the emergency delivery surgery and the ravages of what the HELLP Syndrome had done to her body. She had top notch psychological care, and many support systems in place to help her through the traumatic days she watched her baby teeter between life and death. I’d suffered a traumatic birth (and loss; my son died the day after he was born several years ago) and I was an ‘older mother.’ I could not believe the grace and maturity that my niece displayed, even as she was fighting from physical issues related to birth herself.
And then, Camden came home! After four months in NICU and just two weeks after Kayla turned 22, he came home and we all rejoiced. They were the talk of Duke’s OB/GYN care and NICU and ‘success’ was not strong enough for what they’d lived through and survived.
Kayla was thrilled, no doubt, but still suffering, though. She was in physical pain, particularly abdominal, and often suffered from shortness of breath and extreme cases of sweating for no apparent reason. My sister constantly campaigned that there was, ‘something not quite right,’ about Kayla’s recovery, despite all the interventions in place, and we all worried about Kayla’s ability to recover fully and take care of the baby on her own. Still, doctors told my sister and Kayla that ‘this was normal,’ and to be expected after such a traumatic birth and journey through NICU. Additionally, that Kayla had suffered from HELLP and nearly died in childbirth herself led doctors to believe that she was just taking a bit longer to recover, and their suggestions as such seemed feasible, though my sister couldn’t shake that something wasn’t quite right still with Kayla.
Well aware of the danger that postpartum depression and PTSD can present to mothers and babies, my sister continued to care for both her baby and her grandbaby, thankful that they both had survived and would recover, eventually. The doctors told them so, and what else could be wrong?
But Kayla never did recover.
Instead, on July 4, 2017, Kayla Maree Ferraro died. The cause of death was peripartum cardiomyopathy, and it hit our family like a ton of bricks. Her doctors and caregivers couldn’t believe that something so ‘rare’ could have taken such a young mother.
Peripartum Cardiomyopathy: What You Should Know
Peripartum cardiomyopathy was once thought to be prevalent in African women. Research now shows it has no ethnic target and is a global disease. It’s the result of heart damage from pregnancy and even up to five or six months after giving birth. One-third of women with PPCM can and do recover, but about 10% die. Read that again. About 10% of the women who suffer from PPCM die, and can die even as long as six months after giving birth.
My niece was one of the 10%.
The sad and scary thing is that many of the symptoms that would/should have alerted her clinicians to the peripartum cardiomyopathy were also some of the symptoms of the PPD and PTSD she suffered.
Of course she broke out in sweats often — the sight of your baby near death and attached to all those tubes can and will do that in panic attack after panic attack! Depression can physically hurt too, as she was told by many clinicians when she and my sister would bring her complaints of full-body physical discomfort and lethargy to them. She’d suffered major trauma, and the pains and feelings she was having were completely consistent with their diagnoses. And I get it: why look for ‘zebras’ when you have huge elephants staring you in the face? As mad as I wanted to be at someone for ‘missing something,’ the sad reality is that the overlapse of symptoms simply masked her impending death.
Here’s why we need to look for those zebras still, though–because the unique illnesses and exceptions can and do kill. Though some research suggests that severe HELLP complications and peripartum cardiomyopathy happening in the same pregnancy is rare, it doesn’t mean it is impossible. No, we cannot expect clinicians to run the gamut of every test, often at great expense, when sensible reasonings for conditions are in front of our faces.
But then again, we cannot, cannot, cannot dismiss the mother’s instinct that says, “Something is just not right.”
My sister had been telling me about Kayla’s discomforts and postpartum issues for months. Months. Even I brushed it off as PPD and PTSD, going so far as to tell her “I know what depression is — I experienced it after my baby died” and what “PTSD from birth trauma was like,” and that she was “just going to have to utilize resources and survive through it like I did.” I told her of the many, many women I’d met through the years as editor of Still Standing Magazine who had far less support than Kayla had, and managed to come through the other side.
In essence? I told my sister that Kayla just needed to put her big girl panties on and suck it up, because that’s what mothers do.
And God love that poor sweet child. She tried. She was at that hospital and doing the best she could for her son as much as she could be, all the while, she was literally and slowly dying inside. She persisted even when her body just couldn’t move another minute, because she had a miraculous son to push on for. She listened to every doctor, followed all advice and still…
She died. She died, giving of herself in the most sacrificial way a mother could to her child.
Yes, odds are you won’t encounter the zebras. But, if you feel like you might be up against one, don’t let my sweet niece’s death go in vain. Please look at the symptoms from The American Heart Association, and please contact your doctor if you feel in the slightest those symptoms might sound like you.
Share what you now know about peripartum cardiomyopathy with those you know, not to scare them, but to protect them.
I promise, knowing the risk factors before is so much easier than knowing when it’s too late.
I should add this update on Camden, now two-years-old and thriving. He is truly a beautiful and brilliant boy, meeting milestones at or well ahead of when he should. My sister and brother-in-law have adopted Camden, and he knows fully that “Mama Kayla” watches over him. One day, my sister and brother-in-law will have to share the difficult truth about the sacrifices Mama Kayla made so he could live the amazing life that he does, and we know she’ll be watching over them as they do so too.
Please, if you feel that there is the slightest, “Not quite right,” feelings you are having, talk to your practitioner. Checking the condition of your heart is as simple as a quick EEG and it’s so much better to be safe rather than sorry.
We know this all too well.
Photos: Heather Joy Ali