Our family of seven spent a peaceful day at Dollywood for the first time, basking in the joy of being together. Pearl, our youngest, was calm and content throughout the day, even napping soundly in her dad’s carrier. Little did we know, that evening would mark the beginning of an unexpected and life-changing journey.
As we were having a late dinner, my husband, Drew, noticed a bump on Pearl’s ribs. It seemed small at first, but something about it made him uneasy. That night, we ended up at East TN Children’s ER, where Pearl had chest X-rays. The doctors weren’t sure what to make of the bump. They suspected it could either be an enlarged heart or an enlarged thymus gland, with the latter seeming more likely. The doctor reassured us, telling us the bump was likely a bone callus. However, as we continued to monitor Pearl over the next couple of days, we noticed something troubling—her ribs seemed to retract on both sides, and her sternum was pulling inward. That’s when we knew we had to act fast.
On Sunday night, we returned to the ER. The same doctor who had seen us earlier was assigned to us again. This time, after reviewing Pearl’s condition and discussing our insurance situation, she decided to make a call. The next thing we knew, Pearl was being prepped for an echocardiogram and an EKG. At this point, we still didn’t know what we were facing, but the urgency in the doctor’s voice gave us a sinking feeling.
Around 10 p.m., the doctor returned and turned off the TV, signaling that it was time for a serious conversation. She informed us that Pearl had cardiomyopathy, and that the heart specialist wanted us to take her to Vanderbilt Children’s Hospital as soon as possible. The words hit us like a ton of bricks, but in the midst of the chaos, we trusted that we were in the right hands.
Around 2 a.m. on Monday morning, Pearl and I made the trek to Vanderbilt, accompanied by a medical transport team that had driven all the way from Vanderbilt to Knoxville just for us. The journey was made even more harrowing by the rain, thunder, and lightning, but we pushed forward, knowing our daughter needed us.
We arrived at Vanderbilt around 4 a.m., and the medical team quickly got to work. By 8 or 9 a.m., Pearl had a repeat echo, and it wasn’t long before we learned the gravity of her condition. Dr. Beckerman, the heart surgeon, came in and, after reviewing some images, told me with unwavering confidence that Pearl would need surgery to repair her heart. He also mentioned that she had a congenital heart disease called ALCAPA (Anomalous Left Coronary Artery from the Pulmonary Artery), a rare condition affecting 1 in 300,000 children. This defect had caused her heart muscles to enlarge and weakened her heart.
Before surgery, I could barely comprehend the whirlwind of people coming in and out of the room. The ICU doctor noticed the bump on Pearl’s rib and assured us that it would be addressed during surgery. As we said our goodbyes, Pearl was taken away for her surgery, which began around 3:30 p.m. that Monday afternoon.
The surgery was complex, and there were complications as they tried unsuccessfully to take Pearl off bypass—twice. The surgeon made the decision to slow down the process, taking careful and deliberate steps, and after a third attempt, Pearl was finally off bypass and brought to the ICU, chest still open. We were told that the surgery had gone well, but there were still unknowns.
Dr. Beckerman had performed a miraculous procedure—he removed the left coronary artery from the pulmonary artery and moved it from behind the aorta to the front, reattaching it in a way that didn’t require donor tissue. Through God’s guidance and the skilled hands of Dr. Beckerman, our daughter’s life had been saved.
Pearl had arrived at the hospital in heart failure, and in the days following surgery, she faced additional setbacks. She was diagnosed with colitis, which required a week of bowel rest. However, through it all, we saw God’s hand guiding every step of the journey. The surgeon, who had reminded us that this would be a marathon and not a sprint, was right. We took each day as it came, trusting in the slow and steady progress that was unfolding.
For me and Drew, the words “slow and steady” became more than just medical advice; they became a mantra that kept us grounded during the most trying times. The PCICU team embraced this approach, and with each passing day, we saw Pearl grow stronger. Every moment was a testament to her resilience, her fighting spirit, and the power of faith and prayer.
Now, as we look back on this journey, we are overwhelmed with gratitude. Our sweet Pearl, who was once fighting for her life, is thriving. Through the stormy nights and anxious days, we have seen God’s miraculous work in our daughter’s life. We are forever grateful to Dr. Beckerman and the medical team at Vanderbilt, and most of all, to the divine strength that carried us through every twist and turn.
Pearl’s story isn’t just about a rare heart condition or a complex surgery—it’s a story of hope, strength, and the unwavering faith that carried our family through the darkest of days. We are beyond blessed to be her parents and will continue to share her journey, knowing that through her, we’ve witnessed the miraculous power of love, faith, and resilience.
Pearl has taught us that nothing is impossible when we stand together, with faith and hope guiding the way.
