Last updated on September 30th, 2021 at 10:16 am
At 31 years old I became a mother to twins. It was everything I had ever dreamed of and more. Also at 31 years old I became one of the many faces of heart failure. It was something I never imagine could happen. I suffer from Peripartum Cardiomyopathy, which is a rare condition that effects 1 in 4,000 pregnant women. It is auto-immune system based and essentially leads the mother into congestive heart failure. It occurs during the end of pregnancy or in the weeks or months following birth.
In my case I had all of the symptoms weeks prior to delivery. However, like many other women who suffer from this disease it was overlooked and left uninvestigated.
This all leads up to the best day of my life, January 25th. At 3:32 am I heard my daughter roar for the first time (yes, roar). Instantly I knew that she was strong, determined, and I envisioned her ability to impact the world. Next at 3:33 am I heard my son for the first time. He was much milder. It told me that while he was strong he was sensitive. I could envision a future for him where he will impact the world but this time in a much more subtle way. Before I knew it everything that I had spent months preparing for was over. I was sent to recovery and the babies were sent off with their new dad to the nursery for observation. This is when the storm began, but it was a quiet one at first.
Within minutes my legs began to swell. My already high heart rate increased. While the nurses had told me before it was just excitement now they said nothing. Then my husband and a nurse came in to allow me to see my babies before they were taken up to the NICU. I was speechless. I had made it over 37 weeks, they were both well over 5 pounds, and I was holding them, they seemed perfectly fine – why the NICU? Nobody had even prepared me for this being a possibility. Instantly, any concerns I had about myself were gone. I was not the priority in my own mind.
In total I spent four days in the maternity ward. Each day I became more swollen and my heart rate remained high. But a doctor was never sent in to assess the situation. I was constantly told to walk it off, that the best thing I could do was to walk. So I did from the first minute I was cleared, but nothing changed. In fact it grew worse. I spent a lot of my walking time going to and from the NICU. I promised myself that I would be there as much as I could and I wouldn’t miss a feeding (even those through the night). Luckily for me my mother had arrived on the day the babies were born and she knew from the minute she saw me that something was wrong. But I desperately wanted to believe that I was fine. I knew that my babies needed me. Finally the bittersweet day came when I was released. The doctor addressed my condition as normal and said that if it did not change in a week to report back. So I headed home without my babies under the impression that in a week I would be fine. However I never got that chance.
My first morning home I woke up and was unable to breathe. Its hard to describe, but maybe the best way to explain it would be to say it took more effort than it was worth to inhale. Everything in my body felt off. Even though I had just woken up I was tired and weak. My chest throbbed and it felt as though my heart was going to leap out of my chest. I convinced myself that none of this was important. My babies would be coming home soon and I had to go to the store to get their formula and then I had to head down for their feeding. When we made it to the store I was able to walk from one of the front parking spots to the end of the main entrance. I had to hold onto something and as I was gasping for air I looked at my mom and tried to say, “Something is wrong – I feel like I am dying.” After a few minutes of resting I decided I had a mission and I was going to complete it, so I was off to the very back of the store to get their formula.
On the way out my husband had to help me out to the car because I was unable to breathe, my chest hurt so much, and I felt like I was going to pass out. When we finally made it to the car I just sat down and sobbed- how could I be a good mom? I wasn’t even able to get them the food that they needed to live! I knew I had to pull myself together, my mission wasn’t over yet. We were due in the NICU anytime for their feeding. By the time we made it in the building, scrubbed in, and gowned up, I was back to gasping for air. But I was determined to feed my babies, it was the least I could do. A nurse had insisted I raise my legs as the swelling had gotten so bad. What I didn’t know is that after she did this she went off to get the NICU doctor to come talk to me. This was the first time, but certainly not the last time, that I saw fear in the doctor’s face. She explained to me that something was seriously wrong, my breathing was scary, and that I should head to the Emergency Room immediately.
Being stubborn I left and went home. I still thought that if I rested that I would feel better when I woke up – I was just exhausted. I assumed that all new mothers felt this way. So I laid down with three pillows to prop myself up but I still couldn’t breathe. I closed my eyes, and that’s when I knew that if I went to sleep I would never wake up. So I slid down the hall to the room with my husband and mom, I wasn’t able to speak I was so out of breathe and scared, so I just leaned against the wall crying. That’s when they jumped into action and I was off to the Emergency Room.
Once we made it to the front desk my mom was trying to explain to the woman what was happening. It felt like I had been leaning against the wall for years, I just felt myself slipping. That’s when I saw a nurse; I made eye contact and barely got out the words, “C-Section, Saturday, can’t breathe.” He grabbed me and almost carried me to a bed. I felt like I was floating! They hooked me up to everything, turned the oxygen way up but couldn’t get me above the low 80s. My resting heart rate was in the 140s, sometimes spiking higher. It looked bad. A doctor quickly showed up and explained that I probably had pneumonia, he would run the tests for it and then he would treat it, most importantly I would be just fine. I immediately felt the largest amount of guilt humanly possible, how could I have went into the NICU earlier in the day when I had pneumonia? Did I get any babies sick? Were my babies sick? Just how many people were at risk due to my carelessness? Again proof that I was an awful mom.
Just before he started the tests he mentioned that it could also be Post/Peripartum cardiomyopathy, but really I should just put that out of my mind because it was extremely rare. So I did just that. I had enough to worry about. How could I keep my promise to spend every available moment with my babies if I had pneumonia? So the tests were run, the IV drugs given, and then began the looks. Nobody would directly look me in the eye and they just kept telling me to stay calm or to calm down. The mood entirely shifted, everything became much more urgent. That’s when I saw the doctor talk to my husband. Both of them looked worried, upset, and devastated. When the doctor finally made it over to me he informed me quietly that I was being admitted into the cardiac wing. The only thing I could think to say was, “Then I don’t have pneumonia.” He just shook his head and walked away after saying sorry.
At that moment I fell apart, knowing I was going to miss the evening feeding. I really cannot put into words what that did to me, hearing everyone tell me that I had to focus on myself for the sake of the babies made the wound deeper. I’d just given birth, I was supposed to have been celebrating life, adoring my beautiful babies, and staying up all night soothing them. Instead I was headed to the cardiac wing.
When the doctor came in she reassured me that most women with this disease recover and that I should be hopeful. She also informed me that I would be advised never to become pregnant again, as it would threaten not only my life but the baby I would carry. This news shattered me. I wasn’t planning to have any more children right away, but my husband and I never meant for this to be the end of our family. She didn’t attempt to soothe me she just said for me to get my rest. So my family left and I was alone. Left to deal with the fact I would not get to see my babies, I would never have any more babies, and currently I was in congestive heart failure.
Another doctor visited me that night from the High Risk OB office. She was in tears saying that she couldn’t believe she missed this; she had a patient die from this very disease before. I had no clue that death was actually an option until this point. My cardiologist later admitted to me that she didn’t think that I would make it through the night without having a breathing tube inserted. She had also confided that she was sure that I would end up needing an LVAD (Left Ventricle Assist Device) implanted as well because my heart was functioning so poorly. The blunt truth was my ejection fracture was 15%. At 10% they put you on a heart transplant list (she did brief the transplant team as well as the cardiac surgeons daily as to my condition due to her expectations). My left ventricle was enlarged and the valves on both sides of my heart were leaking. In addition, I wasn’t able to breathe because my lungs were filling up with fluid. I had a slight fever and they worried I may have some type of infection to top things off.
But that next morning she came in and I was in bed, breathing on my own. My numbers slightly improved and things looked a little bit better. I won’t bore you with all of the details of the hospital. It was about a ten day stay in total, they took a lot of blood, ran a lot of tests, monitored me to no end, and I received visits from many different doctors. This probably sounds like a lot, but the hardest part for me was being separated from my babies. My daughter had gone home, so all I could do was talk to her on the phone. My son was still in the NICU, the nurses took time out of their day (which I am grateful beyond words knowing how busy they were) to take me down to see him. I’m not sure how to put into words the feelings I had when I went down there. First, I was escorted by a nurse; I was never allowed to go on my own. Second, I had to be in a wheelchair at all times, connected to the wires and tubes with oxygen. Third, I had to travel with a life pack, “just in case” as they always attempted to reassure me. I would never trade a single moment I had with him; each was precious. But I knowing that I was in a unit full of babies that were ill, who needed care and attention and all the nurses, doctors, and other parents were staring at me tore through me. At my best I could manage fifteen minutes of holding him, some days it was less. During each of these minutes I was questioned as to what happened to me, would I ever get better, and how did this happen? I didn’t have any answers. I didn’t want to talk. I wanted to pretend to be normal and hold my son like we were in the nursery at home that I spent so much time making just right.
I felt like such a failure. I thought, I couldn’t be a mother. I wasn’t able to give either of my babies what they needed. I apparently couldn’t even take care of myself.
Finally I was cleared to go home. I balanced being with my daughter, visiting my son in the NICU, and my disease the best I could. I had an army of visiting nurses, a home oxygen tank (and a portable one), and a calendar full of appointments. Plus, I was up to about a dozen pills a day, I had to measure every ounce of fluid that went into my body, weigh myself daily, eat a reduced sodium diet – it was a completely different life for me. I was constantly tired and struggled to do anything at all. I would have to take a break when I did a simple diaper change. I simply had never felt so weak and useless in my life. That’s when the anxiety attacks began. They were so severe that I truly believed I was having a heart attack. It got to the point that they were relentless. But I monitored my stats and reassured myself I was fine. I couldn’t go back to the hospital; I was terrified I would never see my babies again. So I coped with it.
My son came home about a week before my mom had to leave. I tried to figure out a system for my new life as my husband had gone back to work. I was terrified and I didn’t feel that I could confide to anybody about my fears.
Then the day came when my mom had to leave. I have never cried so much in my life. But then it happened, one of the babies needed a bottle, so I got up to get it. Then next a baby needed changing or hugs and kisses. I won’t make any claims that it was easy – it wasn’t. I struggled through every bit of it. When somebody asks me how I managed I answer by saying the truth: I just did it. And truly in that sense I am not different than any other mother out there.
Before I knew it my six month “wait and see” period was up. The original theory is if you will recover you will do so in six months. Thank goodness that has been proven wrong because at six months I was only at 25% (50% is considered recovered). I was devastated, depressed, and felt like I had let everyone down. I felt like my disease affected my children’s lives, upset my family, and created a strain on my marriage. If there was ever a time that it seemed like everything was falling apart this was it.
I want to address one thing. Recovered. It means something different to each one of my heart sisters out there. For some it means running a marathon while for others it may mean being able to play with their children at the park. For me it always meant having another child. I learned after my diagnosis that many women went on to have successful pregnancies. My cardiologist has assured me I would not be one of those cases as I was too severe. More than likely we would be passed over for adoption because of my condition and surrogacy, while I believe it to be a beautiful and admirable thing just reminds me of my own body’s short comings. So while I strive for the recovered status, like each and every other PPCM survivor out there, I fear that I will always feel cheated from the effects of this disease. But I have two beautiful babies that I adore more than words could ever express. They are my overly enlarged heart outside of my body. And not a day goes by that I think of them as anything other than a miracle. But I do worry about the day they ask for a little brother or sister, and how I can explain that I can’t.
There are no guarantees with this disease. It does not discriminate based on age, race, social status, or health. Even those who recover can relapse. Some women receive LVAD devices, others receive heart transplants. Unfortunately, some lose their battle. I am now part of an amazing community – we are heart sisters. We are bound together by a disease that none of us imagined or ever knew about. We support one another, vent, say prayers, send hope, and sometimes just listen. But we are a strong community. And having found them has made my life easier, I finally feel like I belong somewhere. As for everything else, I am dealing with it the best way I can – by waking up each day and doing what I can to make myself stronger than the day before. I have two amazing, inspiring reasons to make myself the best mom I can be and, for now, that is enough.
