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
Meet Connor
Child's Diagnosis: TGA, DORV, ASD, VSD, Single Coronary Artery, Pulmonary Stenosis and Dextrocardia
Has Kerrington’s Heart impacted your journey? If so, how?: Kerrington’s Heart has defiantly impacted our journey. They gave me information on CHD. Offered a kind word and someone to talk to when I felt inhale no where to turn. They gave me meal tickets for my husband as I as we stayed at the hospital.
What’s one word you would use to describe your journey and why?: Overwrought. I was so worried over my child health, if the doctors and surgeons were going to make the right choice for him, even if I would have the knowledge to care for him after surgery.
Please share a little bit about your story: My son Connor was born on April 19th 2011. It was the scariest day of my life. He has had 1 open chest surgery, 1 open heart and been in heart failure besides all the hospital stays, cardiac caths, ekg, echocardiogram and x-rays. Things been a terrified journey for our family. Connor is soon going to be 8 yrs old and looking for another surgery in the near future however he is stable for now. With our love for each other and the help from God to lead us through another day we are thankful. Connor is my world and I am his and together we can concur the trials.