Nathan Bywaters

We found out about Nathan's heart defect when he was 6 years old. It was very shocking because he was very healthy with no symptoms. Since that diagnosis, he has had 3 heart caths and 1 open heart surgery. The only time we have spent at the hospital is following the procedures. Thankfully we have not experienced an extended stay. One of the biggest challenges we faced was dealing with the shock of the diagnosis. Kids at Heart was HUGE in helping us accept the diagnosis and needed procedures. Connecting with other heart families was the best thing for us in realizing there are families and children who go through this and thrive despite it. Another challenge that doesn't get talked about much is the impact CHD has on the heart healthy sibling. Although we didn't spend a ton of time in the hospital, we did have to leave our heart healthy child every time we did have to stay. The fear and uncertainty takes a toll on the heart healthy sibling. Although Kids at Heart does offer a few sibling activities, I would love to see more offered for younger siblings and more support for them. My heart warrior has been very open in sharing his story. We started an instagram account to document his journey and it has been an incredible experience. Through his instagram account, we have connected with heart families around the world. His courage in speaking about the hard parts of CHD has been very inspiring to so many going through the same thing. We are so proud of Nathan and everything he has been through. What gives us hope is seeing how much our doctors care for Nathan and how hard they are working to give him a chance at a better future. His diagnosis is extremely rare and what they have accomplished for him was thought impossible because it had never been successfully done for a child his age. We are forever grateful for brave doctors who advocate so much for Nathan. I would also say to other heart families to make sure to connect in the heart community. Nobody else can really understand what it's like to sign those papers for heart surgery nor what it's like to watch your child experience that other than fellow heart warrior parents. There is something so powerful on this heart journey to realize you are not alone!