Being a mom and sole caregiver of a child with sickle cell anemia has been very challenging. I have been asked questions like “why didn’t you test yourselves before marriage”? One day someone said that our parents were not very aware about genotype so she could understand their mistake but as for me, what was my excuse?

I had always known that my genotype was AS, even rejected a marriage proposal in the past as a result of this. So I was very aware….. when I met my husband and things started looking serious for our relationship, the first question I asked was his genotype. He told me he was AA because he had always thought that. Even when I got pregnant and traveled to America for the birth, upon finding out my genotype they asked that my husband do a test and email it to them. He did and the result was AA. After my daughter was born you can imagine the shock when we found out about her genotype.

As her sole care giver, it has been very tough both mentally and physically. Since moving to the US we have not really had any issues with crisis. Her major issue was having a very low hemoglobin level which has led to her getting so many blood transfusions. She has been hospitalized quite a number of times for splenic sequestration. In January this year, she had a splenectomy done to remove her spleen and has since been on Penicillin. Her energy level has improved greatly since the surgery. The hard part is always explaining to her siblings why their sister was always in the hospital. I have had to miss exams at school, work and a lot of other stuff as a result of this.

I want to encourage the caregivers to practice self care, find time for yourself to do something that you like. No matter how overwhelming and isolating it is to care for your loved one it is also very rewarding as it tends to bring family members together.
For those living with this chronic disease, I encourage you to stay strong, have healthy habits, eat well, stay hydrated, hang out, while it is good to be aware of the problems, don’t let watching for signs get in the way of having fun and living your best life. Don’t let this disease take center stage!

Reference: Akhimien E. 2020 “From @yellowpinkky”.