Stetson

A Tuberous Sclerosis Complex Warrior

This is Stetson! When I went in for my 20-week anatomy scan in January of 2022, we found out he had a very large tumor in his heart. Thankfully, at that time, it wasn’t affecting him. It was called a rhabdomyoma, but if it continued to grow, it was likely he would be delivered early in a completely different city and possibly have open heart surgery. We had several scans and saw a cardiologist every few weeks while I was pregnant. He made it to 38 weeks, but we knew ahead of time he would be going to NICU (3rd NICU baby). He was cleared and came to my room 26 hours after delivery. We had blood tests done, and it turns out he has a very rare genetic condition, Tuberous Sclerosis Complex. He has type one. Basically, his body, at any point on any vital organ, can grow a tumor (kidneys, lungs, brain, eyes, and even his skin).

He’s at very high risk for developing epilepsy; so far, at 10 months old, he has had a brain MRI, had his eyes checked 3 different times, and had his kidneys scanned. Thankfully, all of his scans have come back “clear”!

At times, this is an invisible condition; I had never heard of it until my son was diagnosed with it at 2 months old. As his mama, I am still learning about this diagnosis and everything that can come along with it! As of now, at 2 years old, he has remained seizure-free but has developed tubers in his brain and has at least 2 (that are visible) nodules in his ventricles brain, which is where his CSF drains right now. They are not causing fluid build-up or any other significant issues. We continue to his team of doctors regularly.

He loves his 2 older brothers and loves being tickled, peekaboo, and being outside! The awareness color is blue! My TSC WARRIOR!