“Obviously, there are some challenges that come with living with this disease, but our family has learned to try to focus on the good and attempt to be grateful every day.”
Mom’s View: Samantha’s Perspective
Although Anna Grace is the member of our family with a congenital heart defect, she obviously doesn’t remember the beginning of her story in order to share it. The beginning of her journey with CHD is definitely etched in the memories of myself, my husband – Mike, and Anna Grace’s older brother – Jake. We are honored to share our story with other families. We feel that there is much comfort and hope in knowing that we are not alone in this walk. In fact, we are quite thankful for all of the resources that allow us to connect with others for support!
During an ultrasound at about 20 weeks of pregnancy, we were informed that our baby was a girl and that she had hypoplastic left heart syndrome (HLHS), a very serious heart defect. The doctor rattled off a lot of sobering statistics and gave us a very dim picture of what our heart baby’s life would probably be like. He encouraged us to take 24 hours to consider ending the pregnancy and to let him know our decision. My husband told him that we’d leave the outcome up to God. We were shocked and devastated by the news. I am actually thankful (now!) that the doctor gave us the worst case scenario, because it’s made the good outcomes kind of like icing on the cake! Until Anna Grace was born, we monitored the pregnancy very carefully and did a lot of praying. I was determined to try to be as positive as possible during the remaining months of my pregnancy.
Anna Grace was born on her due date weighing a whopping eight pounds and two ounces. A team of cardiologists were standing by just in case there were problems. Jake, who was five at the time, had been anxious about his baby sister, so it was great for him to see her and hold her right away. Anna Grace was transferred to Egleston the morning after she was born. At four days old, she would undergo her first surgery, the Norwood procedure. While we were at Egleston awaiting the surgery, Anna Grace received fluids and meds through an IV and enjoyed her pacifier while her dad sang to her.
It was difficult seeing her after the first surgery. Our baby was heavily swollen with an open chest and on medications to keep her immobile. Thank God that she progressed pretty well, and we made it through the obstacles that come with recovering from major open heart surgery.
We are so thankful to Dr. Kanter, who preformed all three of Anna Grace’s surgeries, and to her cardiologist, Dr. Mahle, who has been there from day one. Anna Grace had a second surgery at seven months and a third at 20 months. Now she’s 15, and we are still seeing Dr. Mahle! The staff at Sibley Heart Center Cardiology has taken amazing care of our daughter all these years. There is always someone available to answer every question and concern, regardless of the time of day. They’ve guided us as we’ve navigated this journey with its ups and downs.
Sibley has been such a great resource that Anna Grace isn’t too thrilled about transitioning to adult cardiologists in the future. Dr. Mahle shows so much interest in her talents and hobbies. We never imagined she’d be an aspiring television and film actor, riding and jumping horses and volunteering at an animal rescue. Obviously, there are some challenges that come with living with this disease, but our family has learned to try to focus on the good and attempt to be grateful every day.
#1in100: Anna Grace’s View
While having CHD can be so difficult at times, I am incredibly thankful and wouldn’t change my life for the world. Last summer, I attended Camp Braveheart for the first time, which is an amazing program for kids with heart defects. It was the most wonderful feeling to be with others who understood the struggles I’ve faced. It was a life changing experience, and I learned and conquered so much because of it. My cabinmates are my forever best friends and sisters. It’s hard to remember life without these girls!
I am also so grateful for the doctors and nurses and my family who have been there for me my whole life. They saved me, and I will never be able to thank them enough!