At ten weeks pregnant, I completed non-invasive prenatal testing (NIPT). The results showed that I was not only having a boy but also a high probability of XXY. Doing my research online resulted in a lot of old, incomplete, or inconsistent data. Klinefelter syndrome seemed a big mystery, and information from parents living with kids with XXY was nearly nonexistent. I had more questions than answers. My main takeaway was that my baby boy, Theodore, would be able to live a long, “normal” life. And we would set him up for success in overcoming the challenges he may or may not face due to XXY.
Nothing would have ever changed my mind when those NIPT results came back. We were lucky to have an amazing and supportive doctor on our side. Sadly, only some people’s experience is like ours. I hope my story will help others find resources and connect with others within the XXY community to know that it will be okay!
When Theodore was born, bloodwork determined he did have XXY. At this point, we began a year-long journey with genetic counselors, specialists, and our doctor. We did our due diligence in following the medical guidelines outlined by the genetics specialists. Theodore received EHT (early hormone therapy) to help kickstart testosterone production, and he has thrived! Everything he does is fantastic; I can’t imagine my life and a world without him. He is such a bright light, and I have no doubt that he can and will change the world!
It’s our story to share:
I have wanted to keep some parts of my life close and private. But this is an opportunity to create community and conversation and offer personal perspectives that I wish I had access to during my pregnancy and afterward. The first year of Theodore’s life was a lot of stress and unknowns. Now that I’m on the other side, I can breathe and share. I also realized a lot of that stress was unnecessary because my kid is fantastic and healthy. He loves everything that kids love!
We know sharing our story will bring more awareness and help those working hard to educate parents and people in the medical community on XXY. I know the stress and anxiety I felt in going through this experience blindly as a new, first-time mom. I want to help other parents know that it will be okay! Suppose Theodore’s journey can help others living with XXY or parents getting those prenatal results back and feeling overwhelmed. In that case, we will shout it from the rooftops! Speaking of rooftops, my podcast recently came out, and it feels so good to share it publically.
If you know someone with Klinefelter syndrome, are a parent doing NIPT or are curious, please reach out! I’m happy to share our story and pass along the doctors and specialists we have used and the online communities I have since connected with. Theodore is an incredible child, and I can’t wait to see this little boy’s significant impact on the world. As his mom, I hope always to give him the support and tools he needs to succeed in everything he chooses to do!
Big hugs to all the parents out there, no matter what journey you’re on, because it’s the most demanding job any of us will ever have! We see you, and you are supported and appreciated! If you would like to contact me, you can connect with me on Instagram: Allison’s instagram