3x Congenital Heart Defect Survivor
I was born in 1990 in Anderson, SC with a fully cyanotic body. I shocked the delivery room as my blue body brought revelation that my heart was not well. I was rushed by helicopter to Charleston, SC to MUSC Children's Hospital. I was soon diagnosed with 3 Congenital Heart defects: Ebstein's Anomaly, Pulmonary Atresia, and Atrial Septal Defect. Because the Ebstein's and the pulmonary atresia were so rare - especially in 1990- cardiothoracic surgeons were truly not sure what surgical approach to take with my heart. Everything pertaining to those particular defects were still pretty experimental. In fact, there had been one baby girl there two weeks older than me who strangly enough presented with Ebstein's, and their procedures were unsuccessful. They decided to try a new approach with me. However; the doctors warned my parents that I would most likely die- say goodbye now. They told my parents if by some miracle I survived, they could anticipate a short life expectancy as I would live as a vegetable and would have many medications and restrictions.Obviously, praise God, they were successful! I have had three open heart surgeries total. One at 2 days old, a second at 2 weeks old, and a third at 4 years old. Currently, I am 26 years old, married, expecting my first child ( a miracle in itself), and I am a marathon runner whom has no physical limitations nor do I take any medications. I live as normal a life as anybody else. This is because of God Almighty, my Lord and Savior. Through Him- He worked through the doctors to save my life. God did not give me a vegetable lifestyle- God allowed and gave me a truly miraculous life!
I see an adult congenital heart doctor- she specializes in adults with heart defects present at birth. This specialty is still a small field. There are only 2 specialists in South Carolina. She told me 4 years ago that she anticpated in 3-5 years time my heart will need another surgery. I had never realized that my heart would need continual surgical maintenance. The time frame of the surgery which is to be a pulmonary valve replacement, is based upon the strength of my heart. Is it showing any weakening?, decline?, enlargement on the right side? - things like that. Over the past 4 years since I began to see this new specialist, my heart- much to her joy and surprise- has not shown any weakening! So the time frame of the 3-5 years set 4 years ago has been abolished. I will still need the surgery, however, "when?" is now uncertain as my heart is so strong. Praise God!
I mentioned I am pregnant. This is also a miracle for my heart. Some patients with congenital heart defects are advised not to have children as it can be very detrimental for the mother's body and the risks are too great for the baby. My specialist had advised my husband and I 4 years ago when he and I were still just dating, that having a baby would be safe for me. What wonderful news as I had been warned through childhood and adolescence that it may be too great a risk. However, my specialist advised that having a baby would best be planned out and should happen before my pending surgery of the pulmonary valve repair as the strain pregnancy brings would be best on my natural heart versus straining a new valve. At the time, as I mentioned, my husband and I were still just dating. We were overwhelmed. We decided we would not let this news rush us. We would date, marry when ready, and pray continually for God's will. As I said- that time frame of 3-5 years for surgery given 4 years ago has been abolished. We are nearly halfway through the pregnancy and it has been wonderful! The baby is a girl, named Ellie. She had a fetal echocardiogram in my tummy last week to search for heart defects. She stood a high risk of inheriting my heart defects or heart defects in general. The sonographer and doctor there with us enthusiastically exclaimed Ellie has no heart defects and she is perfectly healthy! Praise God for continuous blessings! My heart is handling pregnancy well. I am still running and walking high milage and doing many other exercise routines I have always done.
I am so thankful that God has used my heart to prove that CHD's are serious, dangerous, and deserve caution and a healthy lifestyle; however, a normal life can also be lived out so long as there is good nutrition and a lot of activity and exercise. I have beaten many many odds and am overwhelmed by God's graces. I want to honor the miracles He has given me by living a healthy lifestyle continously and by reaching out to and helping others who are affected by poor heart health, heart disease, and stroke. It is my greatest passion. Thanks for letting me share my story with you!
