By Alexandra Benson
We never saw it coming. At 25 weeks, my pregnancy had been healthy and easy, so my husband and I walked into the ultrasound appointment that day confident that all was well.
I hopped up on the exam table and struck up some small talk with the sonographer. But within a few minutes, our small talk had turned to silence, and a grim look of concern came over her face. She hurriedly walked out of the room and returned with the doctor. The doctor looked me square in the eye and said, “If I had a scalpel, I would cut this baby out of you right now.”
She told us our baby was in fetal distress and that an ambulance would be taking us to the hospital. We were going to deliver our baby girl that day.
We were welcomed into labor and delivery by a team of doctors and nurses, and within minutes they had me hooked up to IV’s and monitors in preparation for an emergency C-section. A nurse at my feet prayed with me while another held my hand and yet another diligently watched the ultrasound screen. My heart was overcome with fear, worry, and a sense of desperation. I knew that a baby born so early would face serious complications, and I knew that the chance of losing her was real.
And then, a doctor, relatively new to the hospital, noticed something on the screen and said, “Wait!” That word, “wait”, likely saved our daughter’s life. You see, on that screen was a bouncing twenty-five-week-old baby girl – a bouncing baby with an incredibly slow heart rate. Those things don’t usually go hand in hand. For the first time in hours, there was a glimmer of hope. They called in a pediatric cardiologist who delivered the news that would shape the rest of our unborn daughter’s life: she had congenital heart disease, specifically, congenital complete heart block.
Our precious girl’s tiny heart was broken, and in that moment, so were ours – broken for the uncertainty ahead, broken for a life full of appointments and surgeries, broken for the pain that she would surely endure, and broken for a lack of normalcy. But at the same time, we were incredibly grateful – grateful for access to top notch medical care, grateful for answers, and grateful for the doctor that said “wait” and avoided an unnecessary early delivery. Oh how different our story might have been!
Our daughter went on to be born at thirty-seven weeks and underwent her first cardiac surgery at five months old, eventually becoming fully pacemaker-dependent. Today, she is a thriving twenty-one-month-old living with congenital heart disease. She enjoys chasing her big sister, flipping the pages of books, and coloring on the walls. Though her life is sure to be marked with a myriad of doctor’s appointments, numerous surgeries and procedures, and funny looks when she goes through airport security scanners, she does have some semblance of normalcy, and her prognosis is good. We are grateful.
Weeks prior to that life-changing ultrasound, we had chosen the name Edith. The name means “victorious in war.” Little did we know then what a true warrior our little Edith would turn out to be.Our daughter’s diagnosis has brought a lot of things into perspective for us. We have learned how to love a daughter that we might lose, something that had never crossed our minds prior to that ultrasound. We learned how to live in the land of uncertainty and appreciate even the smallest of victories. And we’ve been reminded how important it is to live in kindness to others, not knowing the battles that people are experiencing.
Alexandra Benson is a wife and a mother to two toddler girls living just north of Atlanta, GA. She worked for years in nonprofit organizations, and her passion for congenital heart disease advocacy was born with her youngest daughter. She serves on the board for the local chapter of The Children’s Heart Foundation and enjoys finding ways to encourage and instill hope in people walking through similar circumstances. Her family’s mantra is “Live kind. Love big.” You can follow Edith’s story on Facebook at Edith’s Heart Journey as well as The Heart Hope Project.