Why It’s Important to Learn Your Genotype
If you haven’t already, I would recommend you get your genotype tested.
Sickle cell is an inherited disease. This means if both parents carry a sickle gene, there is a chance the baby can have sickle cell disease.
If both parents have the sickle cell trait, there is a 25% chance of each baby having sickle cell disease. It’s possible for two people with the trait to have five children, all of whom have sickle cell disease. There is also the possibility that of those five children, none of them will have sickle cell disease.
It’s a genetic lottery. Except there is no life-changing prize money at the end; instead, there can be a life-altering, debilitating disease that brings copious amounts of pain and potential organ failure with it.
This risk decreases if one parent has normal blood. The problem is that most people who carry only one sickle cell gene are asymptomatic. As such, thousands of people globally may carry the gene without knowing it. This was the reality for my parents, who got married over 35 years ago. Back then, genotype testing was not the norm, so neither of my parents was aware that they had the sickle cell trait until they had children.
Thankfully, as time has progressed, so has medical science. Now, a simple blood test can let you know what your genotype is. The earlier you know this, the better. In this day and age, particularly in the Western world, there really is no excuse for people to find themselves in the situation my parents were in almost 40 years ago, only learning they were sickle cell carriers when they gave birth to a baby with the disease.
If you excuse my bias, considering my parents were unaware and uninformed until I came along, they’ve done amazingly well in raising and supporting me. They’ve also been fortunate to maintain a long and happy marriage while having a sick child.
Many married couples with sick children are not as fortunate. Having a child with sickle cell is no small task; it will change your life and your marriage forever. Also, the impact on siblings cannot be understated.
Having a child with sickle cell is not a decision to be taken lightly.
Personally, I don’t think it’s a decision at all. I am diametrically opposed to knowingly having babies when both parents have the sickle cell trait — for reasons that are obvious, I hope. But as much as I am against it, I have learned — particularly more recently — that not everyone feels as strongly as I do on this subject.
But you can only make good decisions in family planning once you have all the information required. Arm yourself with the information. Book a blood test with a reputable health provider in your locality and learn your genotype.
Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sickle cell disease.
Thank you so much Mary for your Blog. I am a mother of a 22-year-old Son who has SS sickle cell and it has been so hard but God is so good and I appreciate your stories they are so inspiring!
Thank you so much for your comment Lisa - wishing you and your son all the best
I learned I had the trait when I was in the military, 50 years ago. When I met my wife, she was a medical student. She had no idea she had the trait. Until I met her, I always asked every woman I dated & got serious with if she had the trait. My wife & I lived in different cities & mostly spoke over the phone. It was before the Internet. Eventually, we began to meet once in awhile, but I didn’t think we would date. When she graduated from med school & had to move to a city where she knew no one nor had any relatives there, I decided to move there with her. Things just kind of fell into place in a short period of time & we got married. I never did ask her about whether she had the trait or not. A couple of years after we had been married, she got pregnant & we were ecstatic. Then, I asked her if she had the trait (Duh). She didn’t know. When she found out she did, I was convinced our baby would have the disease. It didn’t matter to us, we were going to have the child no matter what. Sure enough our son was born with Sickle Cell Anemia. It was tough going initially. We had to drive 2 hours to a hospital that had a pediatric ward. Fortunately, it was the Children’s Hospital of Philadelphia (CHOPS) & world renown Sickle Cell Anemia specialist, Dr. Kwaku Oheny Frempong, was head of the Sickle Cell program there. He taught us so much & made us feel capable of caring adequately for our son. It’s been a real challenge, but our son is now 22 & though he has struggled mightily, at times, he has managed not to have any serious organ damage, so far. He is an intrepid soul & has always tried to do whatever his healthcare providers have recommended & asked of him. I can’t say I wouldn’t have married my wife or not had children with her had I known she had the trait. We are thankful for our son & feel honored to have been chosen to care for someone who has needed lots of support, care & love. Someone who is so special that he is a blessing beyond anything Sickle Cell ever challenged us with.
Thanks for your comment John - the story of you and your wife sounds very sweet and romantic. I am happy to hear your son has a supportive family structure in place to help him navigate life with sickle cell.