Asked to Say Goodbye Before She Was Even Born — Ciara Karavangelos on Carrying Emelia Through Fear, Faith, and Open-Heart Surgery 5793

Before December 28, 2016, the anxieties of pregnancy for me were the kind that all mothers-to-be experience. The worries about morning sickness, choosing the right nursery colors, debating baby names in the soft glow of a late-night conversation. I had no idea what Congenital Heart Defect (CHD) meant, and I’d never heard the term Tetralogy of Fallot spoken aloud. But that day, everything changed.

That cold winter morning, my husband and I found ourselves in a small, darkened room at the hospital, staring at a screen where we could see our unborn daughter’s heart. The room was quiet, too quiet, despite both our mothers sitting there, holding our hands, trying to provide some semblance of comfort.

The specialist performing the fetal echocardiogram moved methodically, and when he spoke, the world tilted beneath me. Emelia had been diagnosed with Tetralogy of Fallot with Absent Pulmonary Valve. Four structural abnormalities. A missing pulmonary valve. Those words hit like a violent wave, their clinical nature offering no protection from the weight of their meaning. It was a heart-wrenching diagnosis, one I never expected.

We were told that Emelia would need open-heart surgery shortly after birth in order to survive. I was already scared to become a parent. But now, I was asked to picture ventilators, surgeons, and a future defined by hospitals instead of bedtime routines. Fear consumed us. It followed us home, it sat with us at dinner, it kept us awake at night. It became our constant companion.

Then came the questions no parent should ever have to answer. They asked, again and again, if we wanted to terminate the pregnancy. The words stung, each question more painful than the last. Saying no the first time had already cost us everything we had to hold ourselves upright. We were faced with an impossible decision. But through it all, we refused to give up on Emelia, and I prayed. Not for healing, as others expected, but for strength. I prayed that God would be glorified in whatever outcome was ahead, even if it meant not having our daughter’s heart fixed the way we so desperately wanted. The waiting was the hardest part. Every movement, every kick, was a reminder of what could go wrong. Each appointment brought with it more unknowns.

On April 21, 2017, Emelia was born. When I saw her breathing, I cried in a way I never had before. It was a miracle to hold her, even though we couldn’t hold her until five days later. She needed immediate help in the NICU. We were told her journey was far from over, but she was alive. At just eleven days old, we were able to bring her home, holding on to gratitude as our only lifeline.

But the challenges didn’t stop. Just a short time later, Emelia was diagnosed with 22q11.2 deletion syndrome, also known as DiGeorge syndrome—a microdeletion on her chromosome that could cause over 180 possible symptoms. This condition, it turned out, was the reason for her heart defect. We were left with even more questions, more uncertainty, and the fear that the road ahead would be even harder than we had imagined.

The first few weeks were full of heartache. After two terrifying weeks at home, Emelia had a tet spell in her pediatrician’s office. Her oxygen levels dropped rapidly, and an ambulance was called. The sounds of urgency, the rushing around, fractured time in a way that I will never forget. At just six weeks old, we handed our baby over to surgeons who would stop her heart in order to save it. The surgery lasted eight hours—eight agonizing hours of pacing, praying, and clinging to a future we couldn’t see.

Her recovery was grueling. Emelia struggled to come off the ventilator and remained intubated for eleven days. But, just as quietly as she had fought for life, she surprised everyone. She came off the ventilator, another miracle in our little girl’s fight for survival.

Two months later, Emelia came home, but she still had a feeding tube. It became another symbol of how different our path would be. But at sixteen months old, she graduated from the feeding tube—a victory we celebrated with all the joy of a holiday. Day after day, we learned to live in a rhythm defined by endurance. Hospital visits. Appointments. Therapies. Vigilance. Fear, wrapped in love, became our daily routine.

One of Emelia’s doctors once told us, “Your daughter is a strong one. She will climb mountains one day.” At the time, those words felt impossible, but over time, they became a prophecy. We took her to those mountains, and she climbed them with a determination that left us in awe. Laughter and joy radiated from her, a clear defiance against the odds she had already overcome.

Today, Emelia is thriving. She runs, jumps, and makes friends wherever she goes. She is smart, kind, and loving. Her hugs are given freely, her kisses are generous, and she radiates joy. Yet, her journey is far from over. She will need more heart surgeries in the future, and that knowledge still fills me with fear. Our biggest challenge now is speech, and though those who love her understand her well, there are still moments when the world struggles to understand her.

I fear the day when her peers notice her differences. I fear the questions that will come, the cruelty that can live in innocence. But I also know that hope is stronger than fear now. Hope is found in the way Emelia lives—unapologetically, fiercely, with an open heart.

I remember writing something when Emelia was just a newborn. I had begged God to let the cup pass from me. I promised that if I could hear her cry, if I could watch her breathe, I would walk this road again without hesitation. And now, I praise God on the mountain, just as I did when the mountain stood in my way.

Emelia’s life is a story of unrelenting strength. A story of hope that refuses to be overshadowed by fear. She is living proof that miracles happen, even in the darkest of moments.