Congenital Heart Defect Awareness Week, Feb. 7-14

A Congenital Heart Defect Survivor's Story

By Tiffany Olmstead, Macaroni Kid Monroe-West Monroe, LA February 12, 2017
Every February is Heart Month and the week of February 7-14 is Congenital Heart Defect (CHD) Awareness Week. This is the story of a CHD survivor, and Macaroni Kid Publisher, Tiffany Olmstead.

Heart Surgery. Words that no one wants to hear as a child, or adult. Words that can impact your life, or not. My story is one of a congenital heart defect survivor. In 1978, I was born with aortic stenosis, along with cleft lip and cleft palate. After I was born, a heart irregularity was discovered. However, it was not until I was 2 months old when Dr. King in Monroe, Louisiana, performed a heart catheterization that the severe aortic stenosis was diagnosed. Two years later, I underwent my first open-heart procedure with an aortic valvulotomy performed in Chicago, Illinois. Doctors told my parents to expect the procedure to prolong my life by just 2-6 years.

Throughout my childhood, I never understood the seriousness of my heart condition. I was involved in dance and competitive gymnastics, attended school with honors, and enjoyed life as a “normal” kid in between surgeries to repair my cleft. Yearly cardiology appointments with echocardiograms monitored the valve.

In fifth grade, I was diagnosed with endocarditis. Treatment consisted of intravenous antibiotics for two weeks in the hospital, then four weeks at home. During my hospital stay, I had an incredible student nurse who played games with me daily, as well as taking care of her other student nurse responsibilities. I wish I knew her name, because she was a tremendous influence on my desire to become a pediatric nurse. Since that time, pre-antibiotic therapy is required before all dental procedures and any invasive procedures.

Junior high years consisted of yearly cardiology appointments in Birmingham, Alabama dance classes, and riding bicycles with friends. The summer prior to ninth grade, 10 years after my first heart surgery, during a routine cardiology appointment, the cardiologist stated those words ~ Heart Surgery. I remember crying, yelling, and being rather mad at the world. Not only did I feel scared about surgery, but I was also a teenager and concerned about missing summer practices and the first football game performance with the high school dance team. The dance team never treated me differently and those friendships have lasted a lifetime. In July, the second aortic valve repair was performed by Dr. Pacifico at University of Alabama at Birmingham, UAB. 

After high school, I began pre-nursing at Northeast Louisiana University, now University of Louisiana at Monroe, ULM. During the last year of nursing school, I became tired easily and fainted twice during clinicals. A visit to the cardiologist a few months early revealed the aortic valve was severely stenosed and leaky, and the mitral valve was also beginning to leak. Then I heard those words again ~ Heart Surgery. The surgeon recommended a valve replacement immediately with either a porcine or cadaver valve. Their goal was to replace the valve with a cadaver, if one was available in the correct size, so I may have kids in the future. At that time, newer procedures and methods were being performed; however, I was not a candidate. I opted to wait a month to complete my semester finals in December and was pre-admitted the next day at UAB. Dr. Kirklin completed an open heart surgery, replacing the aortic valve with a cadaver valve. Upon waking up, I never imagined the word "cadaver" would make me so happy. 

I completed my BSN from ULM the following semester in May, married my husband in June, and began my nursing career on an adult cardiovascular telemetry unit. My husband and I moved for a short time near Little Rock, where I followed my dreams as a pediatric nurse. We returned to West Monroe three years ago, and I have continued as a pediatric nurse and soon began publishing Macaroni Kid Monroe-West Monroe. Yearly cardiology and echo appointments are still required; however, there are no changes in the aortic valve function and appearance! I have two children, ages 12 and 8, neither have medical problems. The future of my heart’s medical needs are unknown; however, it is very promising with the American Heart Association providing research, treatment, and support. The gift of my family’s and friends’ lifetime of support is the foundation of my success as a congenital heart defect survivor.