Cardiomyopathy: Heart transplant: My son

On May 17th I was induced to give birth to what will now be my first and only child after loosing my father 9months before. The night time nurse after my water breaking told me it couldn’t have. She then didn’t check on me or my unborn son for about 5hrs after my epidural.  At this point I hadn’t seen that the nurse had stopped my  Pitocin and never restarted it. My morning nurse came in and became frantic with my night nurse. The morning nurse flipped me to my side put oxygen on me and asked when I last felt my son move.  Amidst the arguing nurses my night nurse stated they were understaffed at night what did she expect and the morning nurse responded she wasn’t going to loose a baby today. My dream birth of my son had turned to panic and horror. My nurse now is flipping the feed of the monitor and calling for a doctor and saying I’m going on for an emergency c-section my baby has been in distress since my pitocin was stopped and I had stopped dialating thus causing him to be stuck and his umbilical cord pressed during every contraction. 

In having my c-section I was pumped with too many fluids. When this happens if you aren’t weighed after a surgery like this your body can begin to retain fluids. My son was born blue and with a little work was soon fine but where his health scare ended mine begins. I woke very swollen in my face and legs. Over my few days recovering I was never weighed, never helped to move about by a nurse, never checked by a doctor. Two days later a doctor came in and removed the bandage and a nurse cleaned around my incision. When I mentioned being swollen I was told you’re fine it will come off on a few weeks. Mind you the clothes I wore in 9 months pregnant were too tight now after having my son as well as my shoes. This still didn’t alarm anyone. I was home only one day and when I woke kept hearing a pop rocks noise in my throat. I called my doctor and was told to go to the emergency room right away....mind you as a single parent and post c-section you shouldn’t drive but now I was forced to.

My heart rate was 155bpm and I was severely out of breath at the ER intake and the nurse couldn’t get any blood drawn as my arms were dry. Next thing I knew I was being whisked into a private ER room and told I needed to call family ASAP to be there with my 4day old son. I was in heart failure with pulmonary edema (lungs flooded with fluid) and a blood clot in my spleen that the first hospital didn’t catch. I was drowning in my own body and was hospitalized for 8days in which this same hospital dropped the ball again and missed the blood clot and wasn’t weighing me or giving me proper meds/care for someone in my condition. To my benefit my mother was very knowledgeable to the care needed and argued this with hospital admin and pulled me from their care. I was then hospitalized to Emory whom received me with my heart now only working at 10% ejection fraction rate (rate of pumping blood) prior to this my percentage was 23% and a blood clot as well as my lungs still holding fluids. 

Fastforward to today now 4months later I’m in Chronic Systolic Heart Failure and looking at needing possible LVAD surgery which would come to me being on the heart transplant list. I’m currently fighting every day for my health to enjoy my son. With everything I will never be able to have kids again now, I’m not able to work for the foreseeable future, and I’m at the mercy of waiting to see who will help us fight to the hospital that caused this. Disability I have applied for won’t get back to us with approval or a denial for up to 5more months. If denied we face yet another battle to repeal. 
     
The biggest things we’re hoping to gain from this is to help with living costs, diapers which aren’t covered by WIC or SNAPP, travel cost to and from the heart failure center, hospital bills, and future procedures. As well as paying for all of my procedures I’ve had so far. ❤️

I don’t want this to happen to any first time mom, to anyone that should be enjoying the bliss of a newborn, or those that just go ignored by their nurses. You are your own best advocate and always always always push to be heard! I’m sad to not be enjoying my son as I should be... I’m strapped to a medicine pump, a defibrillator vest, and a lack of physical ability even to the point of not being able to simply  lift and hold my son out of exhaustion. It can make even the strongest parent break down. I hate nothing more than looking at everything I had planned for my son and myself that has turned to ashes as my mother has now taken on being our full time care taker. 

Its been a long journey and we pray that at some point on this path things may get easier for us. We’ve learned the hard way and I pray no one else will. Postpartum Cardiomyopathy is rare but over recent years is being seen more and more in younger women. I thought I did everything right but even exercising, eating right, and all the tricks to a fit pregnancy weren’t enough.
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Organizer

Elle Marie Rollinson 
Organizer
Brookhaven, GA
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