Well, sort of. Before we got pregnant, we knew. We knew there was a 25% chance that our son would have Pendred. We also knew that there was a 25% chance that he would not, and a 50% chance that he would be a carrier. We knew.
We spent almost 2 years learning and adjusting to everything that comes with a child with hearing loss. It became our new normal. Hearing aids, speech appointments, IEP's, learning sign language (incredibly slowly); we knew how to handle it. We were ready for the possibility of having another child with Pendred. So why do I feel this same slightly scared, somewhat unsure feeling? We don't even know 100% that he has it, but I can't seem to shake this unsettling feeling.
With Addie we could only locate one of two mutations and it just so happens that Elliott's genetic testing came back with the same one of two mutations. All these results do is inform us that at the very least, he is a carrier, but since one of the mutations can't be located, the only way to verify if he has Pendred is to perform a CT. A head CT! I am pretty sure this is why my stomach is in knots. I can handle hearing aids, speech appointments, IEP's, and the like. I can handle constantly working on my patience and questioning whether my child's hearing is getting worse or if she is just being, well, a kid. I am, however, having a hard time handling exposing my child to radiation.
Maybe I am overreacting. Maybe I should embrace medical advancements and the ability to confirm whether or not Elliott has Pendred. But then again, maybe knowing right this second (or when he is 1) is not worth the risks that come with CT's. Maybe we wait and see if he hits the milestones? Maybe we have regular hearing evaluations (will come with sedation which I am not thrilled about)? For all the reassuring my husband and I gave each other, for all the confidence I felt at the beginning of my pregnancy, I all of a sudden feel like I am starting to slide. I am standing on the beach, the cool, salty water is receding back to the ocean, and the ground feels like it is coming out from under me. I know I will remain standing, but no matter what, the sand around my feet will erode.
And that is just it. I know I can do this. I know the routine. I know that we are in a great situation with doctors, therapists, and schools. There is just the inevitable lump in my throat, a nagging fear that comes a long with the possibility of several hurdles being thrown in my child's path. If it turns out that Elliott has Pendred, it will not be easy, but I can take solace in the fact that his sister has not only thrived and endured, but is a beacon for happiness and inspiration. He already has the best big sister I could have asked for, but if he has to go through all of this, he has the best role model.
*We will be speaking with our pediatrician in the next few days to discuss the best option for moving forward with identifying if Elliott has Pendred or not. We might be testing in a year, or we might be waiting and seeing if any other signs present themselves.