Sunday, February 17, 2013

Why We Said "No" To Genetic Screenings

I thought today I'd make a quick post about some of the pregnancy decisions we've made that don't really fit into the journal updates.  A big one I've been asked recently is what we decided to do about genetic testing.

I have always known that I have no issues with raising a special-needs child.  Having a child with Downs Syndrome or a child in a wheelchair is something wouldn't deter me from giving life to this child.  I don't feel it is my responsibility to decide what makes a person happy, either.  I am just as happy, if not happier, now than I was before my accident.  So even with the lack of a usable right arm I am still very happy.  I also have a "nephew" who has Spina Bifada and I simply cannot imagine my life without that little guy in it.  Then there was little Jack, the little guy I was a nanny for back in NYC, who was on spectrum (something you can't find out from a genetic testing) whom I love and adore just the way he is.  So I never doubted my personal ability to love and care for a child with special needs.

I also knew that abortion was not something I would be comfortable with.  Again, I didn't feel it was my place to decide who on this Earth is happy and who isn't, but more importantly it went against my religious beliefs.  So I wasn't comfortable making that decision for a child that isn't even born yet.  I got encouragement on this from a friend's younger sister who has a son, Johnny, who was born with a rare neurological disorder called hydranencephaly.  I love seeing the updates of this little guy.  First his parents were told he may not live to see his first birthday (he's now 17 months old).  Then they were told he'd never laugh or show emotions.  Every picture I see of him he's a ball of giggles.  Then they said he'd never grow, never learn, never thrive.  He's doing all of these things.  Perhaps not at the rate a child without hydranencephaly would, but he's doing great and he's such a joy to see.  And, he's happy.  He doesn't realize he's "special" and "different" from other kids. 

Yes, some children with hydranencephaly are not living quite as well as Johnny.  Some do pass away before their first birthday.  But so do children who are born without any genetic disorders.  A genetic disorder not an automatic death sentence.  Just ask Pearl Joy Brown's parents.

So for reasons of personal knowledge of children living with what some doctors claim are disorders that would create a "failure to thrive" or make the babies "incompatible with life" I made the decision to give my child, no matter the condition s/he is born in the best chance possible at life.  So I knew that getting a positive result on a genetic screening would not change how we proceeded with our pregnancy.  For that reason, we did not do any genetic screenings.  It is a completely personal decision.  Not everyone will come to this decision and that's OK!  That's why the options are given to everywhere, whether you are considered "high risk" or not.

We did find two small "issues" in the anatomy scan.  I call them issues and not problems because neither my midwife nor I see them as anything we need to be concerned about.  I will have a follow-up scan at around 26 weeks just to check up on things, but no matter the results I am not worried and I will not stress out about them.  I see little point in stressing myself out and worrying over something that may correct itself over the next 2 months, anyway. 

So that is where we are with the genetic tests.  I will say that a big pro to not doing any is the amount of blood I've had to donate to my midwife during this pregnancy.  ONE blood draw.  ONE!  If you hate needles, this may be a reason in itself!  I personally don't mind them, but I do like having my own blood in my body so I won't complain about them not taking any more than that thus far.

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