A new baby, a new life (the diagnosis, part one).

Photo: Heather Cisler

On August 16, 2014, I became a first-time mom. Five nights later, I was back in the emergency room being diagnosed with Peripartum (postpartum) Cardiomyopathy (PPCM), which is a type of dilated cardiomyopathy where your left ventricle becomes enlarged and your heart cannot pump blood efficiently to the rest of your body. Your body starts to retain excess fluid and you begin to drown from the inside as your lungs become filled with fluid. They don't really know what causes it other than being pregnant and the increased blood volume and demand on the heart. PPCM is a "diagnosis of exclusion" meaning they must exclude all other possible causes for the cardiomyopathy before giving a PPCM diagnosis. There really aren't good statistics on it either; I've heard that it happens in 1 out of 1-2,000 births or as many as 1 out of 850 births. This is my story.

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Our first day home from the hospital with our new baby was August 18, 2014. The sun was shining and the air was hot. We sat on the couch as a family. We cut off our hospital bracelets and thought about our new life, our 'happily ever after'. My legs and feet, which began to swell immediately following delivery, continued to swell with fluids. I had hot flashes. There were times that I noticed my heart was racing, but I assumed it was normal. It was stress; it was the lack of sleep, the hormones. The hospital called to check on me and I said my legs and feet were still swollen. The nurse said it was normal. The visiting nurse came and I showed her my feet, she said it's normal. I could barely walk from the swelling and the increasing pain from the fluids pulling and tearing at my sutures. I didn't understand why things were getting worse instead of better. I cried constantly. Harper wouldn't nurse and screamed bloody-murder when I tried to nurse her. I cried.

We took Harper to her first pediatrician appointment and I could barely walk. I sat in the corner using all my will-power not to burst into tears while the doctor examined Harper. We went home and I cried. My heart raced. Harper wouldn't nurse and wouldn't sleep. I felt like a failure. I felt like a bad mom. I felt that I wasn't bonding with Harper and that she hated me.

On Wednesday, August 20th, we had our newborn photo session. My feet were more swollen than ever. They wouldn't fit into flip-flops because the straps were too tight. I snapped a photo of my feet and sent it to my mom. I knew something was wrong; I knew something bad was happening. No one listened. I felt like the August heat was suffocating me. My feet felt like they were going to split open and that fluid would come pouring out. It was like I was walking on water balloons that were filled with fire.

Harper still wasn't sleeping. We took shifts staying up with her all night. When I did sleep, it was upright on the couch. I blamed my exhaustion on the lack of sleep. I cried constantly; huge, weeping cries. It wasn't supposed to be this way. On Thursday, my mom came back and my cousin came over to help with breastfeeding. I couldn't stop sweating. My heart raced. Harper was able to calm down and nurse. We laid in bed and nursed. Harper fell asleep. I finally felt at peace. It seemed like things might be okay. At bedtime, Harper went to sleep in her bassinet for the first time. I fell asleep in my own bed. When I laid down on my left side, I felt like my body was crushing my heart. I felt it flopping around in my chest. I worried that if I fell asleep, I wouldn't wake up. You know how sometimes you just know things? I just knew. I was too tired to care.

At 11:30pm, I woke up. Something was wrong. My right lung felt heavy and crackled when I exhaled. It felt like the time I had pneumonia several winters ago, like there were Pop Rocks in my lung. I rolled over and woke Angela up. I told her I couldn't breathe. I started to panic. I told Angela to go get my mom. We called the on-call OB doctor (because I didn't know what else to do). He was extremely dismissive and told me to go to the ER. I started crying. I looked down at my 5-day-old sleeping baby in her bassinet. I worried that whatever I had, she would have caught (pneumonia), even though in my mind, I knew it wasn't contagious.

We knew it wasn't smart to take a newborn to the ER full of sick people, so we left Harper home with my mom. It was the most painful thing I had to do, but there was no other choice. I couldn't breathe. I dragged myself into the ER and up to the reception desk. I explained that I had a baby 5 days ago and now I couldn't breathe. The nurse called over her shoulder to someone, saying "can you take a short-of-breath?" They got me in right away and hooked me up to monitors, drew blood, listened to my lungs, my heart. My heart rate soared over 120 BPM sitting down. By this time, my lungs weren't crackling anymore and the doctor said they sounded clear. For a brief second, I thought maybe I was fine, maybe I was exaggerating, it's been known to happen. I showed him my ankles/feet. They sent me for a CT scan and then we waited. The doctor quickly returned and said something like "we think what you have is postpartum cardiomyopathy. It's very rare and can be very bad or it can be OK." He said they could see fluid around my heart and lungs and could see that my heart wasn't working properly. He said I'd need to be transported downtown to the heart center and that I'd need an echocardiogram to see how much damage was done.

He didn't need to explain any more. I knew exactly what this meant; I had seen this before. 10 years prior, my brother was diagnosed with cardiomyopathy. Cardiomyopathy meant life support and comas. Cardiomyopathy meant planning a funeral. Cardiomyopathy meant my 5-day-old baby growing up without ever knowing me. The doctor may have said something else, but I couldn't hear him. I felt numb. I crumbled. Angela called my mom and I could hear Harper crying through the phone. The pain caused by being away from her was like nothing I had ever experienced. Every ounce of my flesh was screaming out for her and at home, her little body was doing the same for me. The memory of this pain still reduces me to tears, a year later.

The nurse came in and gave me some medication, lasix, blood pressure medication. He said something about how I'll probably have to stop breastfeeding. He asked how breastfeeding was going and I explained that it was not going well. He said that was good and that now she wouldn't miss it. What I heard him say was "good, now she won't miss you when you're gone." He went on to talk about his own kids and some story about a woman with breast cancer. Luckily, the lasix kicked in so I didn't have to listen to him anymore as I hobbled to the bathroom down the hall. This would be repeated at least a dozen times more in the next 30 minutes as the gallons of excess fluid were finally freed from my body. After my last trip to the bathroom, the paramedics had arrived to transport me down to the heart center. As I approached the room, I could see my nurse talking intently with the two paramedics. I heard the words "worst case scenario". They stopped talking when they saw me. 10 years prior, when my brother was transported from Lansing to Ann Arbor for his heart, he arrived on a ventilator. They couldn't find a vein in his arms so he had an IV port sticking out of his neck and one out of his foot. These were the images I recalled as they buckled me onto the gurney, my half-pregnant belly sticking out over the straps.

To learn more, here is a brief article on PPCM.