Meet Braylynn

Child's Diagnosis: Tetralogy of Fallot

Has Kerrington’s Heart impacted your journey? If so, how?:

Yes, they have made a huge impact in our journey. The chats, information, stories, prayers, and even the lovely cookies they sent (lol). We are forever grateful for Kerrington’s Heart and for Christy.

What’s one thing you wish you’d been told at the beginning of your journey?:

The one thing that we wish we was told at the beginning of this was we wish we had known about his heart defect before he was born so we would had time to educate ourselves and been more prepared.

Please share a little bit about your story:

On August 11,2019 Braylynn entered this world at 8 am weighing 2 pounds 14 ounces, born at 30 weeks. We didn’t know about his heart defect till 2 days after he was born. That’s when they diagnosed him with tetralogy of Fallot. He was already having a little difficulty with his lungs. It took a couple of days before it all sunk in that our child had congenital heart disease. On September 29,2019 they called me over from the Ronald McDonald house telling me to get to my child’s beside. His oxygen was going down and he was having “blue spells” right then they told us we would be transferred to Cincinnati Children’s Hospital. We get to Cincinnati, scared worried exhausted, to have the doctors tell us they was going to put a stint in his pulmonary value. While there was also battling other complications and a UTI that he had developed. They did the balloon and thinking that it would work till he would have his repair. That same night as he had the balloon done they called at 1:30 am to come back over because they either going to do a stint or full repair. When got there it was not what I wanted to see. The whole room filled with doctors, medication all laid out on the table in case they needed it and the look of worry  in everyone’s eyes. My heart was broken.  The Stint was a success. On Feb 24 2020 he had his first heart repair. Since then he has gained weight and is full of energy. We go to heart Dr. every 6 months to a year to check on heart because he still has a tiny hole and his pulmonary valve won’t grow with him so they check that and every time he hits a growth spurt he will have to have a repair to make it grow with him,. And he has a severe leakage in pulmonary value. If it wasn’t for God, prayers, our family, friends and Kerrington’s Heart organization we wouldn’t had made it thru all this.

Meet Story

Our journey as a heart family started in June 2013 when I was 21 weeks pregnant and I heard the words that there is something wrong with your baby’s heart.  I was thrown into a world that I never thought I would enter. The tears streamed down my face as the doctor was showing me in a textbook what heart defect that Story was going to be born with. The doctor immediately got me an appointment with Dr. Cumbermack, a pediatric cardiologist at UK, where they did a fetal echocardiogram. I was then escorted to another room, where we were told more about her condition and what steps needed to be taken. I couldn’t believe everything that was happening. I was given resources and pamphlets and was told to stay off google, which was great advice. I listened and didn’t google, but I did have one pamphlet that I held tightly to, Kerrington’s Heart. I immediately looked it up on the internet, and the isolation that I had felt slowly faded when I read other stories about other heart families and found that I wasn’t totally alone in this.

Story was born on October 28, 2013 with an unbalanced AV canal defect, and Hypoplastic Left Heart Syndrome.  We had to deliver her in Columbus, Ohio so she could be transported to Nationwide Children’s Hospital after birth so she could be monitored. She had her first heart surgery at four days old. We were discharged a few weeks later, but Story was in and out of the hospital several times during the next several months. During this time Kerrington’s Heart reached out to us. It was such a blessing to see how much they cared about other families who were going through a scary and uncertain time. Story had her second surgery at five months old. She did well with her second surgery and was able to go home a couple of weeks later.  A month and a half later she went into severe heart failure and had to be airlifted back to the hospital. We were told that the only option for Story was a heart transplant. We were in the hospital for several months. While we were in the hospital Kerrington’s Heart provided us with gift cards for food, gas, and packages filled with toys for Story to play with while she was in the hospital. They thought of everything. Even decorations for her room. The gas and food gift cards helped us out tremendously, since my husband, Adam, was still traveling back and forth to the hospital.

Kerrington’s Heart goes above and beyond for families like ours. Due to Story’s suppressed immune system, it is scary for us to get her out during cold and flu season. Kerrington’s Heart makes trips like seeing Santa possible for children with heart defects. Every year they have an event called Milk and Cookies with Santa. Story can get a picture with Santa, make a craft, and receive a gift. We look forward to it every year! They have not only helped our family not to feel so alone during this journey, but they have become like family and provided opportunities for us to be involved with other heart families. We could never thank Kerrington’s Heart enough for what they have done for us these past six years. 

~ Lauren