No One to Blame

I've been thinking about others' perceptions of our situation, carrying a second child with a fatal diagnosis. How some may see this as irresponsible on our part, having subsequent children knowing of our susceptibility to Potter's Syndrome. It is something I have pondered since discovering this baby's condition because it is difficult to acknowledge this baby without acknowledging the loss of our first for the same reason.

We were told that Wyatt's Potter's Syndrome was a fluke, extremely unlikely to reoccur. We proceeded with medical caution, we had three ultrasounds while pregnant with Wyatt which documented any possible anomalies and then after his birth we had his cord blood tested for any chromosomal problems. His chromosomes came back completely normal and physically he had no other notable anomalies outside of typical Potter's Syndrome characteristics. There is no genetic test which can be administered to check and see if we are carriers of something which would be causing the bilateral renal agenesis and most cases are truly flukes. It is not even known the specific genetic etiology that causes this baby's condition, whether it is strictly genetic, environmental or a combination.

The odds of this happening to us again were estimated to be 3%. Let me break down what odds of 3% look like. Both men and women have a lifetime risk of about 5% of developing colon and rectum cancer. Women have a lifetime risk of 12% of developing breast cancer and men a 7% risk of developing prostate cancer. Men and women have over a 6% risk of developing lung or bronchial cancer. The average odds of a baby being born with any birth defect is 3 or 4 out of 100, or 3-4%. The risks of a woman having a miscarriage in her 20s is 10% and in her later 30s jumps to 20%. Men have a lifetime risk of about 3% of dying in an accident and a woman's risk is 2%.

Probably the most important thing to remember though is that our risk of not having Potter's Syndrome reoccur was 97%. To me, that was huge. Now of course, that is all up in the air and likely never to be resolved. Five children, two with Potter's Syndrome, no answers. I would give almost anything to be back at that 3% recurrence risk.