Our Story
My husband, Eric, and I found out we were having twins on August 31, 2017. During one of our many ultrasounds (you get more for multiples), we found out that “Baby B” had a heart issue. Our world stood still. Going from the high of finding out that we were having twins to the low of a health problem with one of them was devastating. We were sent to a pediatric cardiologist at the University of Kentucky’s Congenital Heart Clinic on December 19 for a fetal echocardiogram. Charlie was diagnosed with single ventricle anomaly (his right ventricle is too small and does not pump blood to his lungs as it should), dextrocardia and heterotaxy. We were informed that we would be sent to the Cincinnati Children's Heart Institute, which partners with the UK Congenital Heart Clinic, for further analysis. To get the best pictures of Charlie’s heart, they wanted us to wait a month to see a doctor at Children’s. To say that was a long month is an understatement. It was a month of worry and tears. It was a month of Eric and I reassuring each other that everything would be okay, even though neither of us was entirely confident that it would be.
On January 22, 2018, we went to Cincinnati for the first of many visits and the beginning of a life-long relationship. Another fetal echo confirmed our first diagnosis. But this time, a doctor laid out a plan for exactly how they would save our baby. He told us the diagnosis that we thought was insurmountable was actually not an uncommon diagnosis for their Heart Institute patients. He showed us exactly what was happening in little Charlie’s heart and explained that he would have a series of three surgeries, called the Fontan Circulation. The first would happen within his first week of life; the second, the Glenn, would happen between four and six months old; and the third, the Fontan, would happen anywhere from two to four years old. We met an amazing nurse who is one of the coordinators for the inter-stage, the period between the Norwood and the Glenn, in which we would closely monitor Charlie’s vitals from home and submit the information to her daily. She gave us a binder with charts, graphs, tips, schedules and, most importantly, stories from other families who have been down this road already. I still carry that binder, which now includes much of Charlie’s records, to every doctor’s appointment. As we walked to the car that day, we could feel the stress and worry that had been weighing on us for a month lift off our shoulders. Once we were in the car, I cried tears of joy. We knew we had a long road ahead, but now we had hope.
On March 9, 2018, Robbie and Charlie were born at Good Samaritan in Cincinnati, just a few blocks from Children’s. Charlie was immediately taken to the NICU so they could get him stable and ready to be transported to Children’s in a few hours. Robbie and I stayed at Good Sam for a couple of days to recuperate while Eric bounced back and forth between hospitals to be with Charlie. On March 14, I got to hold Charlie for the first time. Robbie and I were discharged on March 15, the day of Charlie’s first open-heart surgery. He was absolutely amazing. The average recovery time in the Cardiac ICU after the first surgery is 28 days; Charlie was moved to the step-down unit in just 14. Because of a couple setbacks after the first surgery and the Glenn (his second open-heart surgery on July 10), Charlie spent more than half of his first eight months in the hospital. Through those eight months, we got to know a lot of people at Cincinnati Children’s. We saw children and their families trying to live normal lives while bravely battling whatever illness or health issue they had been dealt, just as we were. We witnessed how much the doctors and nurses truly cared about their patients and marveled at how wonderful they were. In July, 2021, Charlie had his third open-heart surgery, the Fontan, and recovered quicker than we could have imagined due to the excellent care of his team. We were prepared for a month-long recovery; he was discharged just five days after the operation.
We knew we wanted to find a way to give back to the hospital that had saved our Charlie, but we weren’t sure how. One afternoon during our eight-week stay after the Norwood surgery, Eric suggested we host a golf scramble to raise money. I told him he was insane and reminded him that we had two infants. Twins are so much work; adding the weight of Charlie’s care once we got home was overwhelming. I asked him how he thought we were going to take care of two babies and put together a golf tournament, and he said it wouldn’t be a problem. So, in the very little spare time he has, my amazing husband has created Charlie’s Heart Charity and organized a golf scramble so we can give back.
Eric and I never imagined that this would be our journey, but we are determined to raise awareness about Congenital Heart Disease. Even though Charlie had a rough first year, we are incredibly fortunate to have unconditional support from our friends and family; we are the epitome of the adage, “It takes a village.” We know that not everyone in our position is as lucky as we are, and we are privileged to be in a position to help those who aren’t. Charlie’s Heart Charity is a way for us to give back to those who have helped our brave heart warrior and to help those walking the same road we have. This is just the beginning of a life-long journey, and we hope Charlie’s Heart Charity and this golf scramble will continue to raise funds for many years to come.