'My Son Was Born with the Same Rare Genetic Tumor Condition I Have. Here's What Our Life Is Like'

For most of my young life, I knew I had something called neurofibromatosis type 1 (NF1 for short), a genetic condition that causes tumors to grow along the nerves anywhere in the body, at any time.  I knew I had cafe-au-lait pigmented spots and small bumps on my skin. I knew I needed to wear a leg brace to walk, and that my right leg was fragile enough to break just by walking across a parking lot. In fact, when I was about 12 years old, I even broke my leg trying to take off a shoe at a local shoe store. 

I was in and out of doctors’ offices and operating rooms most of my young life. I’ve had my leg lengthened and straightened twice with an intricate contraption called an external fixator. Those are just two of the many surgeries I’ve endured. I knew it was a different life, but I never let it put a damper on my positive outlook.

As I grew older and aged out of the children’s hospital I had been at my entire life, I started doing my own research into NF. I was determined to find the best hospital within a couple hour drive, and luckily Johns Hopkins, which has an amazing NF program, was about a two hour drive from where I live. 

I was about 24 years old when I went to my first adult NF appointment.  Many of my questions revolved around becoming a mom. The doctors told me my options and risks for having children, with the main risk being that there was a 50 percent chance I would pass NF along to any baby I conceived. They informed me about the latest in in vitro fertilization (IVF) innovation, in which you can actually test any embryo for NF before transferring it into the uterus. And then if I wanted to conceive naturally, there are more invasive tests called CVS and amniocentesis that could be done during pregnancy to test the baby for NF.

After hearing my options, I listened closely and took all of them in, but I wasn’t planning on getting pregnant for another couple of years. Despite that, I went ahead and got my own genetic work-up done so that when I felt it was the right time I could start the IVF process. At the same time, I was also praying I’d hit the lottery and get pregnant naturally in the meantime, because IVF is so expensive. 

When I was 26 years old, two pink lines appeared on a pregnancy test I took by chance. I had zero symptoms of pregnancy, but something was telling me to take a test. To this day, I don’t know exactly why I took the test, it’s almost like I just had an instinct — finding out I got pregnant naturally was a total shock, or as I like to say, a total blessing. 

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