Saturday, December 24, 2011

Cystic Fibrosis

My son has enough problems just with his little heart.   We were pretty devastated to learn that his newborn screening that is done by the State of Oklahoma came back positive for Cystic Fibrosis.  A Sweat Test confirmed the diagnosis.

What does this mean?

It means that Rowan has one more annoyance in life to deal with.  It means that his life expectancy is significantly shorter than the average person currently, but who knows what it will look like in 36 years.

Where this affects us outside of Rowan is it means that Doc and I are both carriers for Cystic Fibrosis (about 1 in 30 are).  It means that each time we are pregnant that child has a 25% chance of having CF, a 50% chance of being a carrier, and a 25% chance of having nothing wrong with them at all.  Basically, this means that we can't have more biological children without a high risk of CF in them as well.  They do offer tests during pregnancy to see if a fetus has CF - but that is a decision I could never be comfortable with.  I don't want to play Russian Roulette with pregnancies.

SO - if we decide to have more children, we'll be going to adoption route.  It's early to be thinking about this as we don't even know if we want to have more kids, and certainly not right away - but it does help me cope.

I have dreamed of having a big family like mine - and adoption was always a part of it, but having the option to have your own children removed is a tought pill to swallow.

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