Sickle Cell Disease
Parenting a child with sickle cell anemia

Sickle Cell Disease

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.

Children and Sickle Cell Anemia #SickleCell #kidshealthWhen 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.

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  • J. J.

    Hey, I was reading another blog and discovered your blog. I have a 5 month old son with a diagnosis of sickle cell anemia. Like you, I was crushed. How is your daughter? How have you approached her diet and nutrition to keep her healthy and crisis free? Thank you so much for responding!

    • Hi, Thanks for visiting my blog. My daughter is fine. She has never been sick at all. In fact, she has never even had a fever, thank God, because with those come worry for children with SCD. By the God’s grace we have been well blessed. As for her diet, we are strict vegetarians. We only give her fruits, vegetables, tofu, and bean products. We limit all sugary products, candy, cake, cookies, non-100% juice etc. We also make sure she is well hydrated throughout the day. I will write a post about it going more in detail. All the best to you and your son!

  • J.J.

    I would greatly appreciate a detailed reading of your approach. I have been all over the internet searching for ways to optimize his health through nutrition and of course, we have been in deep prayer. I was thrilled to find your blog. Also, I didn’t realize my full name would be visible in my previous post… how can I change the name to just my initials? 🙂 Looking forward to your posr for direction.

    • No problem, I have revised your initials. Have you read “Hope and Destiny: A Patient’s and Parent’s Guide to Sickle Cell Disease and Sicle Cell Trait.” That book was my first introduction to the benefit of nutrition in SCD patients. My husband and I were vegetarians prior to the birth of our daughters, but healthy living has been an optimal goal in our lives that we no longer take for granted. In the post I will also add links to other resources that we have found helpful.

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  • AB

    Hi, I’m an adult survivor of Sickle Cell Disease (48 yrs). Someone in our association passed on your article on pool safety and I clicked on the link. By the way, it was very informative.

    Just want to encourage you in your journey with your daughter. To see that you’ve devoted portions of your Blog to Sickle Cell awareness and education, blesses my heart. Both myself and my brother were diagnosed with the disease and every year we call each other on our birthdays to celebrate another year of victory. I’ve recently found much success by eating according to my blood type and educating myself on what (stressers, chemicals, etc.) has an effect on my blood type. It helps me to recognized what my specific triggers are and do something different.

    There’s a lot that goes through the mind of a child whose life is being influenced by a painful disease and at times you’re not in a good place (Physically, Emotionally, Mentally and Socially) at all. If a parent is not aware of these times, and is unable to create an environment where the child can trust that it’s okay that they are not functioning at “normal” capacity and don’t feel as if they are a burden, a child will often carry these isms and schisms on into adulthood.

    I applaud you for investing in your daughter. My prayer is that you both would be strengthened (Physically, Emotionally, Mentally and Socially) in the Lord and in the power of His might.

    • Thanks so much for writing your words of encouragement. I appreciate kind your words and hearing about your own story and how you and your brother continue to support each other. This disease is widespread, but it doesn’t get the attention that it should; especially within the black community. I believe, the various Sickle Cell disorders should be discussed and people who are carriers of the trait should be aware of their status. My voice is small, but I will share as much as I can and what I learn so that I can help educate others. If you are ever willing to share your story about growing up with Sickle Cell, I would love to publish it on my blog. All the best to you and your brother in the future. Blessings!

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