One of our daughters was diagnosed with Sickle Cell Disease when she was a couple of weeks old. Specifically, the doctor told us she had (SS) Sickle Cell Anemia. So, what is Sickle Cell Anemia? It is a genetic disorder, in which there are a smaller number of red blood cells than the body should contain. These red blood cells are not round; instead, they are c-shaped like a sickle. As a result, blood does not travel throughout the body easily. It is important for blood to move freely through the body carrying oxygen and disposing carbon dioxide found in the body. In a person with Sickle Cell Anemia, their blood may get clogged or stuck in areas causing extreme pain, organ damage, or other problems. Some people are cured by receiving a bone marrow transplant, but this option is not widely available for all patients and in some cases may not be complication free.
When she was about 3 months old, the diagnosis was confirmed, I was crushed. I sat alone in my bedroom with my two babies beside me and cried for a couple of days. Dazed and confused at first, all I could think of was that Sickle Cell Anemia was extremely debilitating and the two people I once knew with the disease were dead.
Once my pity party was over, I told my baby, “Sweetie, we are going to get through this together. Ahead of us is a life long journey, but you will stay healthy. We will learn how to prevent a crisis [episode of pain] from occurring and we will do all we can to keep you aware of what is going on in and with your body. I love you and I always will.”
She looked at me and I knew in my heart that she understood. She would listen to Mommy and Daddy as we guide her to make the best decisions for her wellbeing.
When my husband and I were in the doctor’s office for our third or fourth visit we were told that we both were carriers of the sickle cell trait; neither of us new that we had the trait prior to the visit. I was also too far along at that point to have the babies tested, but I don’t think testing them would have changed my decision to continue with the pregnancy. I prayed often that she would not have the disease, but she does and now we are focused on keeping her healthy and crisis free.
Hematologists, sickle cell patients, and families with loved ...