Peripartum CardioMyopathy: A Silent, But Preventable Killer

Peripartum Cardiomyopathy is a rare, but tragic heart condition that is taking too many mothers away from their children.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.

My niece, Kayla, turned 22 at the beginning of June. In February, she’d delivered her son, under emergency conditions, as she and he were both suffering from severe effects of HELLP (hemolysis, elevated liver enzymes, low platelet count) 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.

Miraculously, at just 27 weeks, my niece safely delivered her beautiful two-pound baby boy, and she survived as well. Doctors repeatedly told both my sister and my niece what a miracle it was that both survived. We held our breaths for four long months as little baby Camden grew in NICU.

Related: A Mother’s Story About Finding Hope After Tragic Loss

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.

And then…Camden came home! After four months in NICU and just shortly after Kayla turned 22, he came home and we all rejoiced.

Kayla was thrilled, no doubt, but still suffering. 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.

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.

But Kayla never did.

On July 4, 2017, she died. The cause of death was peripartum cardiomyopathy, and it hit our family like a ton of bricks. 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.

My niece was one of those 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.Peripartum Cardiomyopathy kills women without even understanding whyShe’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?

Related: One Mother’s Campaign Helps ‘Break the Silence’ About the Loss of a Child

Here’s why: Because ‘zebras’ 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 can’t dismiss the mother’s instinct that says, “Something is just not right.”

My sister has been telling me that about Kayla for months. Months. Even I brushed it off as PPD and PTSD, going so far as to tell her I knew what depression, after my child died, was like, 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.

Photos: Heather Joy Ali


11 thoughts on “Peripartum CardioMyopathy: A Silent, But Preventable Killer”

  1. I am so sorry for your loss. And this is exactly why I started the SaveTheMommies campaign. As a 9 year survivor I still get so mad when doctors miss this diagnosis and we loose another mom. PPCM does not discriminate. It does not care about age or race. We have heart sisters all over the world. Some as young as 18 have been struck by this horrible masked invader. It hides behind the pregnancy symptoms and then attacks us at our most vulnerable stage. Making and giving life. Sorry for what seems like ranting. But I am so frustrated and heartbroken about the brush off we always get from the most of the medical community. Dr. James Fett as been what seems like our only pioneer. We have wonderful support groups on Facebook. And he is part of it and helps us with our fears and questions. If there are anymore PPCM moms please send them our way. Also awareness is vitally important. And SaveTheMommies is trying to become a non profit to do awareness on a larger scale.

  2. I’m so sorry for your niece. I was diagnosed with PPCM in an Emergency room five days after delivery. My EF was 5% and miraculously they did catch it. They could have done a $126 blood test to see if her heart was under stress called a BNP. That’s it. It would have given enough information to find the zebra. The PPCM survivors group I am in is trying to make this a mandatory test as part of mothers care before and after up to six months. It is soooo preventable. I don’t no a mother who would risk death for that out of pocket expense. And if doctors would unite it would be a standard of care covered.

    1. My sister was BEGGING for a BNP. She had tons of insurance, there was NO reason not to, other than, “It’s just PPD/PTSD. She’s a new mom and depressed.”

      Heartbreaking. And makes us angry, if truthful.

    1. Christine, thank you so much for the work you do and spreading awareness. I’m sorry for your loss. Ours has broken our hearts for sure.

  3. I nearly died from PPCM 5 months after having my 3rd child. We know now I definitely had it after my 2nd child but was misdiagnosed and written off my numerous doctors. I was told I was just tired, (of course I’m tired, I just had a baby)…. instead of really looking into why I was SO EXHAUSTED, to the point of tears, they treated me like I was just another complainer. My endocrinologist even told me I was just bored, I need to get out more.
    Between my 2nd son in 2010 and finally being diagnosed in Dec 2013 after my 3rd, I was treated for bronchitis over a dozen times. Despite having never had bronchitis in my life prior to this. Oddly enough, chest xrays were always clear and didn’t show my enlarged heart and fluid filled lungs. I later learned about 25% of people will not show fluid on the lungs on an X-ray… I’m one of them.
    Had I known after my 2nd, that I had PPCM and would likely not survive another pregnancy, I clearly would never have gotten pregnant with my 3rd, but I did eventually feel a little better. Maybe I improved a little despite not being treated, maybe my body got use to it and learned to compensate, or maybe I let everyone convince me It was all in my head and I just needed to put my big girl pants on. Everyone must feel like this and I’m just a cry baby….
    By the time I was diagnosed, I drove myself to the ER in the middle of running errands… I was sure I didn’t have bronchitis this time, but maybe pneumonia, because I was now struggling for every breath and the chest pain was unbearable. It was several hours in the ER where they only kept me because my severely low oxygen level told them something really was wrong. It was the CT scan to find the pulmonary embolism they were so sure I had, that finally showed a grossly enlarged heart that has suffered so long, was barely pumping. They didn’t think I’d ever leave the hospital and go home to my babies.
    I was extremely lucky. I DID go home, but have suffered from severe, chronic heart failure and of course, severe depression and PTS. I was angry, I was hurt, I was exhausted, but I was lucky to be alive.
    I’m angry I was written off, and let others convince me I was a whiner. I’m angry I was telling everyone at the hospital after having my baby, that I was feeling like I was choking and nobody thought anything of it. Despite having some clear issues with the C section procedure where blood pressure issues caused them to whisk hubby and baby out quickly and to the point, I don’t remember what happened after they left and no recollection of being moved to recovery and very little memory of recovery… all things I remember clearly from my previous births.
    WE NEED AWARENESS. Cardiovascular events are now the leading cause of maternal mortality in the US today and yet PPCM is unheard of to most OBGYN’s and maternity floor nursing staff. Something has to change.
    I pray and will not give up until there are no more Kayla’s and children needlessly losing their mothers like this. Not to mention those of us with lifelong heart failure when early diagnosis and treatment almost always means 100% recovery within a few months !
    RIP Kayla. Those of us lucky enough to survive will NEVER stop honoring the memory of our lost Heart Sisters.

    If you or someone you know does, or thinks they may have PPCM…. please follow this link. There is no better support than those of us fighting this fight together.

    https://www.facebook.com/groups/17931387304/

    1. My word, Carrie. I’m so sorry. Thank you for all you continue to do and thank you for sharing the awareness. I’ll join the fight in honor of my sweet niece and all of you warrior mamas.

  4. My daughter didn’t deserve to die. She did everything right. Followed doctors’ orders to a T. Blamed herself for being a baby about things and constantly berated herself for not being able to do more or better. I begged all of her doctors for help and we were dismissed each time, each time being told “this is how all new mothers feel.” I knew something was wrong but no one listened. We had an appointment scheduled with a new doctor the very next day after Kayla passed away. She never made it to that appointment. I lost my baby girl, my best friend and the apple of my eye when I lost her. We have to stop PPCM from stealing any more mothers and daughters away from us.

  5. I have encountered the zebra it pretended to be pneumonia and my daughter died 1 week after having my grandson it breaks my heart to read this story I campaign awareness all the time and try to put it out there in all the right places I would never want another family to have to endure the pain we have and my heart goes out to you and your family xxx God bless you all xxx I raise awareness with cardiomyopathy UK and my local trust xx

Leave a Reply

Your email address will not be published. Required fields are marked *