Story #107 - Beth, Kingston Springs TN (USA) - Emergency Cesarean Section, Medical Negligence, Pregnancy-Induced Heart Failure & A Mother's Heart
My story begins in 1988 when I got pregnant with my first child at 20. My pregnancy was uneventful, and by the end, I was so ready to have her. After a long 19 hours of labor, she wasn’t moving along and became distressed, so I ended up having her through an emergency C-section.
To this day, I still remember people running around me and I can still hear their chatter: “Her HR is up high, BP bottoming out. Get her quick.” I remember, the anesthesiologist had given me so much medication I couldn’t feel anything. I kept telling him, “I can’t breathe!” and him answering, “You can talk, you can breathe!”
It took several hours until I was able to hold my baby because I was so numb. A couple of days later, I was discharged and went home without any issues. But a few days after, I noticed a heaviness on my chest. I attributed it to the surgery, but I couldn’t yawn, and filling my lungs to their full capacity was impossible. When my breath became really shallow, I called my OB. They said, “Drink a warm coke—it’s probably indigestion and burping will make it go away.”
I was 20. How was I supposed to be aware that doctors don’t know everything?
Another day went by, and I felt something was deeply, deeply wrong. I went into my OB’s office and by then, my oxygen level had plummeted down to 70. They told me to go straight to the ER.
The first thing they ruled out there was a blood clot. While they ran the tests, my mother-in-law took care of my daughter. At the time, my parents were both very ill so they were not able to help.
I stayed at the hospital for two weeks, but no one could figure out what was going on with me. They ruled out heart problems and treated me for asthma and pneumonia. I was on heparin for a while. All this time, I was not allowed to see my baby. After that two weeks, I told them that if they couldn’t figure out what was wrong with me, I wanted to go home. They let me. The only diagnosis I ever had was a blood clot that probably had dissolved.
I remember thinking, “Pregnancy does take a lot out of you…”
I don’t think my symptoms ever went away. I was very fatigued. Exercising, or even taking a walk, was always difficult. On the outside, I looked okay, but inside, I had no stamina. This went on for a couple of years. I didn’t know any better and just thought that I had never been an athlete anyway, and that’s what becoming a mom was supposed to do to your body.
I was never much of a person that complained about things. I had grown up with a mother who had a brain aneurysm when I was three and my dad was her caregiver. My sister was autistic so my older brothers and I helped taking care of everything. There was no time for complaints.
During my postpartum period, I rolled with the punches. My mother-in-law was very present and helped out a lot. When I think about this time, I’m surprised at how I pretty much just… did it. I went through the motion of my days and that’s it. By then, my mom had been diagnosed with cancer and my father ended up having a heart transplant prior to me having the baby. My mom passed away four months after my daughter was born. Once again, my reaction to these events was to push through: there was no time to be upset or depressed. I had a baby to take care of.
Fast forward to 13 years later: I got a divorce and remarried. My new husband and I decided we wanted a baby. I was 35 by then. I had developed endometriosis and it took us surgery and a few years to conceive. Once again, I had an uneventful pregnancy and had a scheduled C-section that also went well.
But the night after the baby was born, I felt it again. I had started to doze off, and I remember this sensation coming over my body: it felt like I was having a panic attack while drowning. I sat up so fast I popped my stitches. That didn’t even faze me. I couldn’t catch my breath and I was certain I was going to die. My husband, who was sleeping next to me, jumped up; he saw the blood and that’s what made him freak out.
A nurse came in and we told her what was going on. She brought me a fan and told me I was just having a panic attack because of my hormone’s fluctuation. I thought, “Okay. No. No, it’s not that. But okay.” She didn’t even bother to take my blood pressure.
I had previously mentioned to my OB that this sort of sensation had happened during my first postpartum period, but no one connected the dots.
Amber (Beth’s older daughter) holding Taylor (her baby sister.)
I ended up calming down and got through the night. The next morning, I got discharged. Before I left, I told the doctor on call about the previous night. Of course, he said, “You’re fine. Call us if there’s anything.” They always say that, even when there’s something going on right now.
I went home but instead of getting better, I got worst. I couldn’t take a full breath in or walk to the steps before having to rest. Picking up my baby was out of the question. Over and over again, I kept saying, “I can’t breathe!” So, I called my OB and told him about my symptoms. By then, I was so bloated I looked fatter than when I was pregnant. I was told, “Everybody swells after having a baby. Give it a few days.”
They make you feel like you’re a whiner. Overly sensitive. But I knew (and still know) that I’m not. There’s not a lot of things I don’t like about myself, but I sure don’t complain for no reason.
I let a few days pass then convinced them to see me. My milk wasn’t coming in and everything in my body felt wrong. When I breathed, it sounded like I had Rice Krispies in my lungs. The doctor listened to my chest for a split second and decided I had pneumonia. He put me on antibiotics and sent me home.
Three days later, I felt even worse. My skin had started to turn all shades of grey. By then, my husband had to return to work and I was left alone with my 13-year-old and my new baby. All I could think of was, “I need a second opinion.” I didn’t have a primary care physician, so I went to a “tiny” doctor in an urgent care far away from home. I drove almost an hour because it was Labor Day weekend and I thought I had a bad case of pneumonia, so I didn’t want to bother anyone at the ER.
I always say that this doctor saved my life. Of all the specialists and healthcare providers I had seen from the beginning of my pregnancy to a few weeks postpartum, he’s the only one who took me seriously. I told him my symptoms, and almost immediately, he reached down to feel my ankle. He got me a chest x-ray and told me I needed other tests at the hospital. He said, “I’m going to call them and they’ll be waiting for you. Don’t be scared, I’m here for you: but you need to go. Now.”
So, I drove back home, picked my husband up, then went straight to the ER. They got me in right away and ran all the tests you can think of: blood tests, scans, name it. I remember telling my husband, “This is just what happens when I have a baby. My body reacts weirdly…” But this time, the doctors came back with a diagnosis: myocardial infarction or PPCM [peripartum cardiomyopathy], which is pregnancy-induced heart failure.
I was floored. I didn’t know it even existed—and my dad had a lot of heart issues—let alone specifically for pregnant women. They said, “We’ll be honest with you: your IF [injection fraction] is at 10%. We’ll give you medicine. You’ll either die overnight, need a heart transplant, or the medicine will work and you’ll make it. We’ll know by morning.” They were compassionate and kind, but I was in a state of shock.
Luckily, the medication worked. I lost over 40 pounds of fluid overnight. My IF improved by 25% after all the fluid came off. After that, they sent me home with a whole lot of medications and rules to follow. I was also assigned a primary care physician that would take care of me after I improved. I listened. And I did everything. My husband eventually went back to work and I got to stay home with my baby and a teenage daughter who was a huge help.
About a year after the episode, my IF had gone up to 55% (low normal) so my specialists told me I was doing okay and pulled me off the meds.
Beth and her two daughters.
A couple of years went by. I had yearly physicals and was supposedly all better. Five years after my second birth, I asked my PC to get an echo of my heart, just for peace of mind. I didn’t have any symptoms, but I wanted to make sure I was okay. By then, my IF had dropped back to 45%. I was told this was still okay and could live a normal life since I didn’t have any symptoms. No one seemed to really be bothered by these numbers.
Another five years passed. I remember noticing that I had some shortness of breath when climbing the stairs, so I called my doctor and requested another echo. When the results came in, I was down to 30%, which meant back to heart failure, and back on all the meds.
The doctors explained to me that because I had undiagnosed HF after I had my first child, then untreated HF the second time, scar tissues had formed around my heart and led me to have HF yet again, even though I was not pregnant or postpartum anymore.
I stayed on the meds for four more years. Then in 2016, I had another flash edema episode, which is the same sensation of drowning and not being able to breathe that I had after my births. I went to the ER and my IF was back to 30%.
We switched my meds and, later in the year, I underwent a heart ablation to remove the scar tissues.
Right now, I’m stable at 45%. I hope it stays like that for a long time, although I know I might need a heart transplant or an implant if things go downhill.
In 2001 when I was first diagnosed, there was barely anything on the internet about heart failure. The forums I found were all about older individuals in hospice stages, which wasn’t quite helpful for a 35-year-old new mom. But I persisted and just happened to punch “pregnancy heart failure” enough times to find a lady who had had the same thing happened to her. After that, I started this page called “A Mother’s Heart.” More and more people started joining, but eventually, it became overwhelming to handle. I needed to move on with my life, and not just focus on the terrible things that had happened to me—and were still happening to others.
I backed away from the page for a few years, then came back to it when Facebook started. This is when I created the “Heart Sisters” page. Back then, it was said that 1 in 10 000 pregnant person would suffer from PPCM. Now we know it’s more like 1 in 1500/2000. The condition has been diagnosed more, but we’re still losing women and babies because of the lack of knowledge from the general population and medical professionals.
The creation of this page helped me find a purpose. My children were grown and I was ready to start advocating again. During my last HF bout, I was out for six months and used this time to reach out to the author of What to Expect When You’re Expecting. I asked her why she didn’t mention the condition in her book, as it was so prevalent. Her answer was that they didn’t want to scare mothers. I told her that the lack of knowledge is what’s scaring mothers, not the truth. Plus, knowing what to look out for can save lives…
Eventually, she agreed to put a snippet in the book. She promised to do more in her next edition. This was one of the proudest moments of my life.
That same year, the organization Save the Mommies reached out to me and asked if I would help. Along with other women, we made videos for the PPC Awareness Project, and I included the Heart Sisters as much as I could. I think we’ve done some good. One lady reached out to me the other day to tell me that I’d saved her life because she was able to recognize the symptoms and got treatment right away. She now is completely healed from it and has no co-morbidity. It’s huge. And that makes me so proud.
Beth and her grandbaby.
My children are now 33 and 20. Both in their own rights have helped spread awareness. My first daughter wrote a beautiful report for her school after I had my second child to explain to her class what her mom was going through. When my second daughter was old enough, she did a cheer night to raise money for the cause.
This morning, before our interview, my kid told me that I had never led them to think that they were the ones who did this to me and that they were grateful for it. It made me so immensely emotional to hear that…
My oldest has a baby of her own who’s now two. She had a great pregnancy and a wonderful delivery. I was in the delivery room with her when my grandchild was born, and I cannot tell you how much it felt like full circle. Everything was perfect, and they were both fine and healthy. Just the way it’s supposed to be.