May the road rise up to meet you. May the wind always be at your back.
May the sun shine warm upon your face, and rains fall soft upon your fields.
And until we meet again, May God hold you in the palm of His hand.
-Irish Blessing

Tuesday, December 14, 2010

My Own Worst Nightmare

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.

1 comment:

  1. Don't feel awful sharing your story! Yes, it's every Potter's mom's worst nightmare to have another baby with Potter's, but wasn't it yours too? I didn't know (oh to be naive again) that my worst nightmare was to lose my had never occurred to me! When I posted on my birth board on babycenter how worried I was about needed a level 2 u/s, I specifically asked that nobody tell me bad outcomes...I ONLY wanted to hear about good things! Wow, how ignorant a comment! Now that I've been through it, I don't feel immune to it happening again. We've heard the same things from our doctors about it not happening again, but when I had an u/s at 15 weeks with this rainbow, the first thing I looked at was the black/gray colors you mentioned and the "pockets" of fluid. Your story needs to be shared, even if it's not what anybody WANTS to hear. You're not the first momma to have to go through this, you won't be the last (blah, I HATE that!) and your experience and willingness to share it will be an inspiration to someone. Don't feel bad for sharing. This is very real and it's happening, it's not a hypothetical's reality. Yes, your story terrifies me, but it gives me hope, as well. If we have another Potter's baby someday (or a baby with another fatal diagnosis), I'll know that I'm not alone and that I will survive because you did. Losing 2 babies CAN and DOES happen...please don't feel bad for sharing your story.



Related Posts Plugin for WordPress, Blogger...