Thea has a son, Julian, who has sickle cell. She didn’t even know that she or Julian’s father carried the sickle cell trait when she got pregnant. Once they found out Julian would be born with sickle cell, the doctors suggested she consider not moving forward with the pregnancy. She wanted to have Julian because having sickle cell can be difficult, but she was confident she could take care of him and give him a good life.
“Once we found out that Julian would be born with sickle cell, the doctors were saying, you know, we didn’t have to move forward with the pregnancy. But I said, ‘No, we will work it out. Whatever comes with it.”
She talks about her parenting approaches. It means listening to doctors, taking care of her son, and teaching him to take care of himself. For 18 years, Thea has been managing Julian’s doctor’s appointments, making sure he takes his medicine, and generally monitoring his well-being. As Julian has matured, Thea has been handing over more responsibility to him. For example, she let him go on a school marching band trip where he was responsible for his own care.
“My mom gave me a little more responsibility every day, just to help me move on to a different part of my life where I won’t have her telling me what to do every day.”
Understanding Sickle Cell Trait
Thea’s son Julian was born with sickle cell, even though she didn’t know she carried the gene. She is not alone in this experience. Find out more about what having the trait means. If you don’t know if you carry the gene, you can find out how to get tested.
Thea’s truth: the reality of having a child with Sickle Cell
Even though Thea does not have sickle cell, she needs to know the ins and outs of the medical system. Thea’s approach to parenting Julian has been to prepare him to take care of himself. It’s scary for her to watch him take this next big step in his life. She has had to get him ready for what to expect with adult life on his own.