Matt and I have already been on the emotional roller coaster in terms of genetics enough times, I think.
When I was pregnant, after having pushed for probabilities and stats, we were told that the doctors and nurses had never seen a baby with perfect measurements and a small bright spot on the heart come out with Down Syndrome or a genetic abnormality. You know how the saying goes.....you hear what you want to hear. We left there brushing off the thought.
Last April, Matt and I saw a genetic counselor, who told us that we did not individually need blood testing, but instead, that Parker's genetic tests were enough to dictate our future risks. We were told that our risk is 1 in 67 for future genetic abnormalities....which is about 8 times the normal risk for our age, but is not supposed to be affected by the fact that Parker has two genetic issues. We again took this as gospel truth.
Every time we take Parker to the NICU for follow-up evaluations (mainly for our own edification and their research), the NICU doctors, one of which we have mentioned a lot and really respect, are extremely adamant that we be closely followed by a geneticist. This last week was no exception. This NICU doctor was one we hadn't met before, and he couldn't seem to believe that the genetic counselor did not need to test our blood to be able to accurately assess our risks. He told us that raising two children with such genetic abnormalities would be too difficult. Ugh.
This doctor was so concerned about the information we had received that he took down my information and called the doctor at the genetics office himself, as we had only previously spoken with the genetic counselor.
There were several hours where I wanted to throw up. I felt robbed of security...I had accepted the 1 in 67 odds....but nothing more. Call it naive....but again, you hear what you want to hear. The NICU doctor ended up calling me back, saying that the genetics doctor said our information was accurate but that he would look into our case again to review. We are waiting to hear from them to confirm this week.
The take-away, for me at least, is to get 2nd (and 3rd and 4th) opinions, and to try to the best of my ability to reject all "absolutes." We have no guarantees in this life...none. We aren't promised or owed any fate or fairness. We love Parker with all of our hearts, and we want nothing more than to continue growing our family. We will make peace with the family we are blessed with, even if it doesn't end up the way we thought it would.
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