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

Thursday, May 19, 2011

Chewed Up and Ready to Spit Out

I've let my news digest a bit after it chewed at my insides for awhile. That time has allowed me to find the words I need to spit it out. Without fear, disappointment or shame. This is a scrubbed down version of the truth, a truth that perhaps only One knows.

I grew up knowing my mother had a sister who died at birth. She has the most beautiful heart shaped sandstone headstone which used to be right alongside a big strong tree which somewhere along the years was cut down. We visited her grave each year on Memorial Day as a family and I would run through the cemetery collecting loose flowers which I would bring home and string into necklaces. My grandparents would drive us through the cemetery in the evenings, past that tiny headstone and the grazing deer. We didn't speak her name much, never as much as now. Grandma never got to see her precious daughter even though she lived for four hours. Her funeral was over before Grandma even left the hospital. My grandma died of cancer just a month after Wyatt's birth and death but his short time with us allowed her to speak more of her daughter than she probably had for some time, if ever. She told me that it was believed she did not have kidneys either. We have met with two genetic counselors and I have always passed that information on but neither ever showed any concern.

When becoming pregnant with Eli a little and began efforts to locate information about her cause of death. Weeks ago that information surfaced in the form of her death certificate. It listed her cause of death as renal agenesis. Those words literally knocked the breath from my body. It is one thing to believe that there is a possibility that you are responsible for your childrens' deaths and quite another to believe that you are likely responsible for your childrens' deaths. With that knowledge I again began seeking medical information, answers as to why this has happened, how? My understanding of genetics let me to believe that it is attached to my x chromosome which would explain why both of our boys had Potter's syndrome. Further research on x-linked diseases showed me that it is highly unlikely so simple because females are carriers and males only are afflicted in almost all cases. There went that theory. And if it were so simple that I could figure it out how could scientists have not found those answers since Potter's syndrome was first recognized in the 1940s. Yes, the 1940s and they still don't know what causes a majority of the cases. I still believe that our Potter's is likely linked by my genetics which hurts so so badly but I have come to terms with that truth. It is one I cannot change, could not have known and may never understand.

1 comment:

  1. Wow! This is big news. I can't imagine how this makes you feel. My head would be spinning as I am sure yours is. It is so frustrating that they still don't know much more on Potters. I read on facebook that Dr. Brophy was hoping to have some new research out by the end this summer. I continue to pray for you and your sweet family.



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