Parenting a Child with Sickle Cell Disease

Hope & Destiny: The Patient and Parent's Guide to Sickle Cell Disease and Sickle Cell Trait 3rd (third) edition“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).

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.

Blood cells

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 everyday 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.

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. 

 Reference:

Video Credit: NHLBI. May 27, 2011. Living With and Managing Sickle Cell Disease. Retrieved from http://youtu.be/qe59ar-GZmg.

*Photo credit: nih.gov

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7 Comments

  1. miriam

    August 16, 2011 at 8:34 am

    this is wonderful! im sad my girl got scd, but im so glad she is just as happy and healthy as she should be. this was very informative and im so glad you’re providing some education on the matter. do you know why it’s so prevalent in some ethnicities and not others? i’ve always wondered

    Reply

    • elle

      August 17, 2011 at 10:17 am

      Awww…thanks for your comment. To answer your question. The sickle cell trait is a genetic mutation that first occurred in tropical regions where malaria was an epidemic. People (decedents from these areas) with “the sickle cell trait, appear to have some protection against SEVERE malaria infection” (Hope & Destiny, p.22). So it is a part of micro-evolution and ironically developed to help people survive.

      Reply

  2. Olu

    September 17, 2012 at 8:40 am

    Hello. please my son has SCD. I have difficulty getting him to drink 1.4 litres daily. You already have the experience. Please help me out with some tips

    Reply

    • elle

      September 17, 2012 at 4:50 pm

      Hi, try to give your child a special water container that he likes in the mornings. I sometimes, mix my daughters water with a little (about 1/3) of 100% juice or herbal tea. She isn’t use to sweet drinks without water so she doesn’t know the difference. I also give her watermelon and lots of other fruits that are high in water. All your water intake doesn’t have to come from drinking it. I will try to write a full post on foods, which contain a large quantity of water so that you can have a variety of different options to offer your child. All the best to you and your son. Best wishes and good health to you both!

      Reply

  3. Janel Matthews

    December 9, 2012 at 12:46 pm

    Does your child have SS or SC?

    Reply

    • elle

      December 10, 2012 at 1:05 pm

      Our daughter has SS, Sickle Cell Anemia.

      Reply

  4. TSR

    May 17, 2013 at 6:30 pm

    My daughter has SS and while she hasn’t had a crisis she has been in and out of the hospital with infections. I think the daycare has a lot to do with it

    Reply

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