Undergoing Genetic Testing

My husband and I have been having many serious conversations about having kids. Choosing to become a parent is a big decision and one that shouldn’t be taken lightly. In these ongoing conversations, my husband and I decided to undergo Genetic Testing. One of the main reasons I wanted to write about this is because I haven’t seen other people discuss this. I know Genetic Testing exists, but most of the time when I hear couples announcing their pregnancy, they skip over the decisions they made prior. If one person reads this and finds it helps them or even if someone does not want kids at all, but finds this interesting, then I think making this well known is worth it.

My husband is the main reason why we chose to get our genes tested. My husband’s aunt on his dad’s side died of Cystic Fibrosis before he was born. For those unfamiliar, Cystic Fibrosis (CF) is a genetically inherited disease meaning it’s not a disease that can be spread like the flu. CF impacts the amount of mucus the body generates. The mucus is thicker, blocking various passages, and can damage organs. There is no cure for CF and while treatments have steadily gotten better over time, some individuals with CF can have mild symptoms while others have severe symptoms.

My husband wanted a formal confirmation through gene testing if he was a carrier for CF. The first step was to contact a genetic counselor. They asked my husband a series of questions to determine the risk level and if genetic testing was needed. Based on little information my husband had about his family history, they ordered a genetic test to be delivered. To get genetic testing, you can either go into a medical facility and get blood drawn or they use an at-home testing kit. My husband chose the latter. His results took about 2 – 4 weeks. We found out my husband was indeed a carrier for CF.

It’s not surprising that my husband was a carrier for CF. However, it meant I now had to undergo genetic testing as well. I contacted the same genetic counselor who walked me through the process. She said they would test 613 of my genes. With my genetic test, they would be testing more of my genes than my husband’s because if we were to have a boy, I would pass everything on my X chromosome to my son. I was sent the same test and repeated the process. Now all we could do was wait.

Before I reveal my results, I wanted to share what would happen if I was or was not a carrier. If I were a carrier, this would mean that we would have a 25% chance of passing CF to our children. If I was not a carrier, we would have no chance. For someone to be positively diagnosed with CF, they need the carrier gene from mom and the carrier gene from dad. If I don’t have the gene, then our kid may be a carrier, like my husband, but would not have CF. I received my results shortly after Labor Day and am NOT a CF carrier. I let out a sigh of relief. There is nothing wrong with being a carrier, my husband is and he is a healthy person. CF will not be a reality for our kids and it’s one less thing for us to worry about.

There is a cost associated with getting genetic testing done. I hate when people discuss medical care and don’t share the cost. Each test (before insurance) costs $19,000. $19,000!?!?!?!?!?!?? That’s wild. After insurance, my husband (who has way better health insurance than I do) would pay $200 while I would be looking at anywhere between $500 – $600. I can use my HSA (Health Savings Account) to pay for the cost of genetic testing which helps make it more affordable.

I wish more people would be more open about genetic testing and the decisions that they make before having kids. Having kids is a big decision and with the power of the internet, having more resources available makes it easier to make the best decision for you. I want to be clear, not having kids is valid and I will defend anyone’s right to choose not to have children. Getting genetic testing is something I’m so glad I was able to do and it provides more reassurance if and when we decide to have kids.

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