“In the United States more than 80,000 people have Sickle Cell Disease” (Hope & Destiny, p.1).
In fact, it is one of the most prevalent genetic disorders in this country, but also one of the least discussed. I am sharing our story because what you don’t know can hurt you, or your child. Sickle Cell Disease does not only affect African Americans it “affects people of all different racial and ethnic backgrounds, including African, Arabian, Israeli, Greek, Italian, Hispanic, Turkish, and Pakistani (Hope & Destiny, p.37). There are also several types of Sickle Cell Disease and a person can have more than one type, which depends on the genes that a person inherits (Click here to learn more about the different types). Parenting a Child with Sickle Cell Disease means that you have to be open to learning how to take care of your child the best way you can. You have to be willing to partner with help professionals, family members, and friends to collaborate and provide support when you need it most. This post is going tell you about some resources that have been truly eye-opening for me and my family.
Parenting a Child with Sickle Cell Disease Our Story
My husband and I did not know that we both carried the sickle cell trait before I became pregnant. We had lived prudent lifestyles and never realized an issue of any sort would ever arise. We also had no idea that our parents passed the SCD trait on to us. With both of us as carriers, our babies (twins) had a 25% chance of having sickle cell disease (SCD). The disease is not contagious, it is a genetic disorder that parents pass on to their offspring. When our daughters were born, we decided to only bank one cord blood (because of the cost), as life happens, the one that we saved was from our daughter with SCD; instead of keeping it we donated it for research.
Is there really a cure?
Now, two years later I am glad that I had my children: one daughter has SCD and the other daughter has the trait. Consequently, we live every day to better awareness about the disease and to lessen the stigma attached to individuals living with SCD. While a cure does exist, “nearly 200 patients have been cured through a bone marrow transplant” (Hope & Destiny, p.37), it does not come without risks. By the grace of God my daughter has never suffered from the disease, so we have not considered getting her a bone marrow transplant.
Parenting a Child with Sickle Cell Disease Helpful Resources
The September issue of Essence magazine shares an article entitled, “The Sickle Cell Cure” about one family’s journey from crisis to their daughter’s cure. The article gives SCD a positive face of hope when so many negative views are usually shared.
We combat this disease by trying to eat healthy. For my daughter’s first 21 months she was breastfed, now we lead a strict vegetarian, almost vegan diet and eat very few sweets. We also exercise and get plenty of natural fresh air. Additionally, she receives routine vaccinations, gets her rest consistently, and takes in plenty of fluids all throughout the day. She has never attended daycare, avoids extreme temperatures, and does not get sick often. At an early age, we taught her to wash her hands regularly; especially before meals so that she doesn’t compromise her immune system. She goes to her pediatric and hematology appointments regularly and takes penicillin twice a day. We believe that a combination of this regiment has helped her remain crisis-free.
Overall, my husband and I have accepted that God has given us precious children. One with a disease and one without, we are choosing to use this experience to grow closer to Him and each other. I also encourage people to have a hemoglobin analysis done before you get married and have children together.
I would like to do a follow-up article with tips from other parents who have children with SCD. Please let me know what you think and if you would be willing to share your own stories and tips.
Video Credit: NHLBI. May 27, 2011. Living With and Managing Sickle Cell Disease. Retrieved from http://youtu.be/qe59ar-GZmg.
*Photo credit: nih.gov