Genetics Counseling

So last Friday my hubby and I made our way into the bowels of the city for a VERY early morning appointment due to my ADVANCED MATERNAL AGE.  I feel like this sentence should be read in a deep foreboding voice and filled with reverb. 

Can I tell you, it was horrible?

First, there was the requisite cheesy, outdated movie with outfits that were cheesy and outdated in the 80's.  The entire room burst into laughter at the awful cheesy dialogue and poor acting.  Then there was the over simplified genetics discussion... at least it was oversimplified for someone who has worked in molecular genetics for years.  I imagine that there are many people who don't know what a gene is... but I was annoyed that I had gotten out of bed for that.

Then we met with a genetics counselor,  she was fine, asked some vague questions about ethnicity and disability diagnoses in our family and then turned us over to satan the doctor.

The man was horrible.  I was so angry by the end of the appointment that I couldn't see straight.  It has taken me days to calm down and even still I am feeling my blood pressure ramp up again as I try to write about it.  This was his advice:

"You should have the amniocentesis done.  You might not appreciate this, but life as you know it will be over, forever, if you have a retarded child.  And then, if you go on and have other children their lives will be ruined by this retarded child too.  There are risks of course.  At our hospital we have a very low risk of miscarriage for an amniocentesis 1/900.  Now suppose that we establish you as having a 1/300 chance of having a child with down syndrome.  That means that if we take 900 women with a 1/300 risk we will find 3 children with down syndrome and terminate those pregnancies and we will only cause a miscarriage to one healthy baby.  I know, I know, you think that will be bad if you are the one woman with the miscarriage to the healthy baby, but it won't be so bad if it happens to you.  You will be back here in 6 months pregnant again."

This was spewed at us as one entire sentence.  There was no counseling, we were told that we need to abort a child who had a developmental delay, that they would ruin everything if we didn't.  And a complete disregard for the fact that, no, it took us a long time to get this far in pregnancy.  There was no guarantee we would just be able to ever get pregnant again.  And how dare he disregard a child with a disability as someone who would destroy my life.  As I said my husband later "our life as we know it will be over when this child comes regardless of if it has disabilities or not". 

I am angry, furious, that this is the level of advice that we are given.  No real insight into what the risk profile might look like for someone of my age, the point at while they would recommend having additional testing done, and no information to a family on what support they might have or choices they could make in the event of a diagnosis of a chromosomal abnormality.  This was from a government paid specialist.  A foregone conclusion that we would abort.

Then he tells us an anecdote as a parting shot.  "When I was still in Israel I was talking to this bedouin woman and explaining to her how horrible it would be to have a child like this.  And I figured she didn't understand because she just kept nodding.  Finally, she said to me, 'that is the child I want.  We have some children like this in our community.  They are filled with love, they do as they are told, they cause no trouble, this is the perfect child'. "  He shakes his head with wonder and says "The things these primitive people think are important". 

The benefit of this day is that it seemed to arouse a protectiveness in my husband for his unborn child.  "Maybe we shouldn't even do the testing", he says on the drive home.  "I don't want to risk losing Shmily.  We're a family.  No matter what."