This is the story of a little blue dress. It is also the story of a heart baby.

Rachel

A week before our daughter’s birth, we found ourselves in a conference room at the hospital where she would be delivered, in a different state than our own home. We were there for the most difficult meeting of our lives, a meeting with the palliative care team to discuss life support options for our unborn daughter. We had to grapple with the reality that, because of her rare type of heart disease (cardiomyopathy), most interventions would not provide her a path home from the hospital. Essentially, all of our hopes were riding on the strength of this tiny human we hadn’t yet met.

Just when we thought our hearts couldn’t bear any more anguish, we were informed about the various memory-making opportunities available to us should our daughter pass away at birth. It was suggested that we bring a special outfit for photographs with her. We had been hearing ever since our 20-week ultrasound that doctors had “serious doubts about her viability” because her heart squeeze was so weak, so I hadn’t shopped for baby clothes. It was just too emotionally painful to think about heading to a baby clothing section where I would find myself surrounded by happy, excited moms preparing for their soon-to-arrive bundles of joy. I feared that my time with my youngest would be so much shorter than I had hoped when we set out to have a second child.

With just days until our scheduled delivery, and with a heart heavy with fear but clinging to hope, I headed to the nearest mall and found myself shopping for a dress I worried would be my daughter’s first and last. I brushed my fingertips along the different fabrics, wondering how to pick out a dress of such importance. Buried among the racks and racks of stiff dresses with itchy tulle, my fingers stumbled upon a single dress of soft blue velvet. This was the dress for the little girl we had already decided to name “Cordelia” because it meant “Heart of a Lion.” I knew that if she wore the dress that weekend, it would mean we had lost her.

Delivery day arrived, and, to everyone’s surprise, instead of being born blue and silent, our girl was born pink and screaming. She would spend months in the hospital, fight her way home after a serious blood infection and successful catheterization, and eventually battle her way off the transplant list. To celebrate her four-month birthday, I put the dress on her amid smiles and delightful coos of affection. Sometimes a dress is more than a dress.