At some point and time in the last five weeks I've taken a step back. Immediately I sought out the support of others, not just others who have lost babies/infants, but others who have lost babies to Potter's Syndrome like we have and will. I posted our story and gratefully accepted all who shared my pain. One mom who I have known since after losing Wyatt said that losing another child is our worst nightmare come true. I thought about that comment. It is so right, this is my worst nightmare times one hundred. But I also realized that I am every Potter's Syndrome parent's worst nightmare too. So many are told, just like we were, that it was just a fluke, that there was no explanation for why it happened to their baby, that it was highly unlikely to reoccur. That is what I believed and I honestly would have been terrified to find another family who had lost or was going to lose two children to Potter's. Even more so because now that I am losing two, I still don't have the answers. Blessedly at the level 2 ultrasound, they scanned my kidneys and I now know that I have two. Our oldest daughter had some issues with urinary tract infants when she was two so we've had many scans of her kidneys and she also has two normal kidneys. She did have a urine reflux condition which I inquired if it could be related to Potter's at the time and was told it was not. However, after doing extensive research on the topic now, it appears they truly don't know and perhaps it was related. There is no magical test which will grant us the answers we seek. We have met with a genetic counselor and she had no statistics on the odds of recurrence or any answers as to how this could have happened twice in our family. I have no answers, only the reality that it has happened twice and most likely was not a fluke for us.
And I feel awful sharing my story now. Because I know that reading it after losing Wyatt would have terrified me and most likely terrifies many, if not all, parents who read this. It's almost too much to think about in terms of percentage and numbers. I have found statistics saying that Potter's Syndrome happens about 1 out of every 3,000 to 5,000 births. It has a 3-5% recurrence rate and only 20% of Potter's cases are classic Potter's as in our case. That makes us quite a statistical anomaly. It is our worst nightmare come true.