Both of us have the trait. What now?
This is one of the most common questions we get, and it usually arrives with a lot of fear attached. Here is what the situation actually is.
First, nothing is wrong with either of you
Carrying the sickle cell trait is not an illness. You are healthy, you will stay healthy, and roughly one in eight Ugandans is in exactly the same position. The trait has survived precisely because it protects carriers against severe malaria.
The actual odds
When both partners carry the trait, for each pregnancy there is roughly a one in four chance the child will have sickle cell disease, a one in two chance the child will carry the trait like you, and a one in four chance the child will have neither.
Two things people get wrong about these numbers. They reset with every pregnancy, so having two healthy children does not mean the third is safe. And a one in four chance means three in four children will not have the disease, which is not the near-certainty many couples assume when they first hear the news.
Your options
This is your decision and nobody else's. What we can do is make sure you know what the choices are.
Have children, and plan for it
Many couples do. Knowing in advance means testing your baby at birth rather than years later, and starting folic acid, preventive antibiotics and malaria prevention immediately. That early start is the largest single factor in how a child with sickle cell does.
Talk to a genetic counsellor
Someone whose job is to explain the options without steering you, rather than tell you what to do. Ask us and we will help you find one.
Ask about testing during pregnancy
Prenatal testing exists. Availability and cost in Uganda vary, and it raises decisions some couples would rather not face. Ask your clinician what is realistically available to you.
On the blame that often follows
In too many families, the news arrives and someone gets blamed, usually the woman. It takes a gene from both parents. Neither of you chose this, neither of you did anything, and neither of you could have known without a test. If this is causing pressure from relatives, you are not the first couple in our community to go through it, and talking to someone who has is genuinely useful.
Get tested before, not after
If you are reading this before you have children, get tested now, together. It is a simple blood test. Knowing does not make the decision for you. It just means the decision is yours.
This article is general information, not medical advice. Your clinician knows your case and this page does not.