Agapex

Today is National Rare Disease Day! Our daughter Faith has a rare disease called heterotaxy. Her organs are arranged differently than the “typical” human. There are two types of heterotaxy, left atrial isomerism (LAI) and right atrial isomerism (RAI). The prognosis for RAI is usually much worse than that of LAI. When I was pregnant with Faith, we learned that she had LAI, which manifested as her heart having 2 left atria and no right atria. Therefore, Faith doesn’t have an SA node or pace maker. She has atrial pacing in her heart. She also was born with two SVCs (superior vena cava) and no IVC (inferior vena cava). Her azygous vein is still there and takes the place of her IVC. Faith has a midline liver and a right-sided stomach. When I was pregnant with Faith, I was terrified. I didn’t know what to expect, and my perinatologist told us that Faith would very likely need heart surgery, among other surgeries when she was born. We also were told she probably wouldn’t have a functioning spleen and would have to be on oral antibiotics for years because the risk of sepsis is high with these children. I had no choice but to pray and trust in God’s will for our little girl and her life. After she was born, she had an “exploratory surgery” because she was at risk of volvulus-a surgical emergency that if not promptly treated, could be fatal. I was crippled with fear and anxiety as we wheeled Faith into the operating room when she was only 6 days old. Her intestines, although vertically displaced, had a nice wide base and were functioning the way they should be. They also found a spleen! We were overcome with relief and knew that prayers were being heard and answered. Although we have faced many “unknowns” throughout Faith’s first years, she turns 2 on Sunday and is a healthy and fierce heterotaxy warrior that amazes me every day. I continue to thank God daily for answering our prayers and carrying me through the times of uncertainty. 🙏🏼 The body is amazing and God is good!💫 #rarediseaseday2024