My husband, Eric, and I found out we were having twins on August 31, 2017. During one of our many ultrasounds, 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, dextrocardia and heterotaxy syndrome. We were informed that we would be sent to the Cincinnati Children’s Heart Institute for further analysis. To get the best pictures of Charlie’s heart, they wanted us to wait a month to see a doctor in Cincinnati. To say that was a long month is an understatement.
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 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.
- The third, the Fontan, around three years old.
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 in Cincinnati. Charlie was taken immediately to the NICU to get ready to be transported a few blocks away. 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. 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 the Ronald McDonald House. Without the Ronald McDonald House right next door, I’m not sure how we could have managed those long stints away from home.
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. We were also amazed at the kindness and compassion we received at the Ronald McDonald House.
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 and repay the generosity we received from the Ronald McDonald House 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 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.
Eric and I never imagined that this would be our journey, but we are determined to raise awareness about Congenital Heart Disease. 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 will continue to raise funds for many years to come.
I don’t know what we would have done without the Ronald McDonald House during those three months. The stress of having a medically fragile child can be very overwhelming. I cannot imagine having to also worry about the cost of housing on top of that. And as much as you want to spend every waking second with your baby, sometimes you just need a break. With the House just across the street, we had a room to retreat to when we were feeling exhausted and frazzled, which is worth its weight in gold – you can’t take care of your baby if you don’t take care of yourself.
We are beyond grateful for the RMHC and hope it continues to help families like ours for years to come.
Charlie and his family lived in our House and felt compelled to give back. So far, they’ve raised $32,000 to help our guest families! If you are interested in creating your own fundraiser for our House to help families like Charlie’s, you can find more information here.