My Story: Final Diagnosis


Seven days on bed rest stretched into entire weeks. Eventually, Jenny told me that I couldn’t go back to work unless I stopped bleeding, and I had to notify her of each new bleed. She also stipulated that I must sit down with as little movement as possible, and I could not work more than four hours per day.

To accommodate these restrictions, I walked slowly when I had to walk and asked for a personal assistant at work to bring me supplies. I also needed flexibility from my supervisor to leave whenever I felt the need. I could not go out of the house for any other reason except work, and I had to take it easy at all parts of the day. Each morning, I rubbed my sore, unused muscles and wondered what that day would bring.

“What did Atlanta say?” Jenny had called to explain that I would need an FMLA form. I knew she wanted us to make a decision soon. I was almost seven months pregnant and didn’t know the hospital at which I would deliver.

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My Story: Big Atlanta


I remember driving into Atlanta that cold Monday morning to talk to a myriad of doctors. I had never seen a hospital so big. We wound our way around their parking garage, trying to find any open spot. We were already late for the first appointment with the cardiologist.

Finally, we rushed through the huge glass doors and asked a receptionist where we should sign in. By the time we entered the cardiology section, we were over an hour behind schedule already.

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My Story: Not Giving Up

24WWIQ1SOKAs soon as I got home the evening after our first high-risk ultrasound, I started looking up ectopia cordis. What was it, and why did it happen? Was there anything that we could do? I wasn’t about to just give up so easily on saving my baby.

I learned that this condition was basically just the heart growing outside the chest somehow. There are different ways that ectopia cordis can happen. The high-risk doctor that we saw seemed to indicate something about amniotic band syndrome, a phenomenon where the baby gets tangled up in sticky bands that form in the amniotic sac. These bands can prevent certain parts of the body from forming correctly, usually just a finger or foot. In our case, the band wrapped itself around our baby’s abdomen and chest.

“We have to at least look into it, Sweetie. We can’t just let her die.” I furrowed my eyebrows at Kenny. He nodded immediately. We would question and find more opinions from specialized doctors.

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My Story: Part 2

Although I had so casually dismissed the TA’s comment, I kept praying over the next few hours that everything would be all right. My heart thumped against my chest. What would this mean for my sweet baby?

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