Expecting a Baby? Here's Why Genetic Counseling Matters for Sickle Cell Awareness

Genetic counseling is very important for expectant parents when it comes to understanding their future child’s health, especially when there may be a risk for conditions like sickle cell disease. It’s not just about getting information, it’s also about having the time and space to ask the hard questions, process the answers, and make truly informed decisions with clarity, rather than parents ordering their own tests or having a non-genetics/counseling expert order for them.

Sickle cell isn’t just a diagnosis; it affects every part of a child’s life, from early infancy into adulthood. It can impact energy levels, cause pain crises, increase the risk of infection, and even affect organs over time. Sickle cell disease is inherited, which means it’s passed down through genes from parents. Often, parents who carry the sickle cell trait don’t even know they’re carriers because they’re healthy themselves. But when two people who each carry the trait have a child together, there’s a 25% chance with each pregnancy that the child will inherit the disease.

This is where genetic counseling becomes especially important. When couples know their carrier status early on, whether during pregnancy or ideally before, it opens the door to options and the ability to walk through these with someone who's trained in genetics and counseling. They can learn about the condition, discuss different paths forward, and feel supported throughout the process. Regardless of the end decision, knowledge becomes power, a tool, not a burden.

It’s also about more than just science. Rather than navigating the unknown, genetic counselors help parents walk away feeling a bit more grounded, with real information, emotional support, and a trusted provider helping them think through both the medical side and the personal side of their decisions.

And when it comes to something as personal and exciting as bringing a child into the world, that support can make all the difference!

Natalie Samson, MS, CGC, INHC