Wednesday 3 July 2013

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First, there was the requisite cheesy, outdated movie with outfits that were cheesy and outdated in the 80's.  The entire room burst into laughter at the awful cheesy dialogue and poor acting.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."

21 comments:

  1. My blood is boiling just reading this! You're a better woman than I, I would have gone off on that "doctor." Is there any way you can report him for his stupidity?

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    1. I think I was so stunned in the moment I didn't know what to say. My husband swears that my retelling is accurate too. I always worry I tend to exaggerate when something like this happens... but nope.. he actually said those things.

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    2. I had my husband read your post and he agrees that that doctor was an asshat, so it's not just us infertiles being "sensitive" or anything like that!

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  2. OH EM GEE! What kind of a doctor says that!?! I am so mad that you had to hear that. I am sorry! On the bright side-- your husband outlook is awesome!

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    1. My husband is awesome... he's struggling sometimes.. but i know he fell in love with this baby when he saw that teeny tiny heart beat for the first time and I think when we have our next ultrasound tomorrow he is going to end up over the top in love.

      And yeah, the doctor was an ass. Seriously an ass.

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  3. Uh, let me pick my jaw up off the floor first.

    HOLY smokes, are you serious? I cannot even imagine hearing that, from a doctor, at an appointment that you are forced to attend and yet provides no counseling or helpful information.

    Love your husband's response. Is there someone else you can get more information from? And as Aislinn said, report this guy? It just sounds so inappropriate, and from a professional. Doesn't he know the "r" word is not cool?

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    1. Right?? He was crazy. I am still stunned that this is the kind of medical advice that we were given. It is appalling. As i've said before I have a severely disabled nephew and I know how lovely he is. That's first hand information not everyone who goes through this counseling has.

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  4. So sorry you had such a bad experience. Don't let that ruin your hope in becoming parents!

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    1. Don't worry, it won't. We've fought too long and hard to get here... it won't ruin the dream.

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  5. Wow. I feel like this whole movement toward pre-screening has taken good science and turned it into a very, very bad thing. It should just be about information presented in a sensitive, educational manner. It should NOT be about bullying someone to make the most difficult decision of their lives.

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    1. Agreed. There's huge implications on both sides. All I can hope right now is Shmily is ok and we don't have to make that kind of decision.

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  6. I'm so sorry! This is appalling!! What a racist, insensitive asshole. He really should be reported to some higher level authority. Terrible.

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    1. Agreed. He's an ass. Fortunately I don't have to see him as a doctor again.

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  7. I feel sick to my stomach and am so angry that a doctor--well, anyone really--spoke to you like this. I think it's especially horrible that you went in there thinking you'd get to learn about and discuss your options...maybe even get to ask a question or two... The fact that he just shoved his own ignorant opinions down your throat is awful. (And I don't just say ignorant because I disagree with his opinion; I say it because the idea that any child could "ruin" someone's life just by being born is ignorant, plain and simple.) Two things: If you are still intersested in learning more about AMA, find another doctor. It might still help. I think there are blood tests now that allow you to avoid an amnio... My OB was actually just telling me that his daughter-in-law (36 and a 1st time mom) just got hers done. Essentially, you take a sample of the mother's blood, extract the fetal DNA in it, and can find out things like Down Syndrome, the sex, etc. Also, AMA is not a death sentence. It's amazing how many moms I know who were 40+ when they had their very healthy babies!

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    1. It's funny, we suggested to the doctor that we would be doing that test rather than amnio and he was very dismissive, after all, it is ONLY 99% accurate, not 100%. In Canada it also costs between $800 and $1500 to do, it seems to be significantly cheaper so we may see if we can do a day trip to the states to have the blood test performed. Yes, he was a horrible ignorant person. And I keep thinking how many women end up bullied into making one decision rather than getting support in making another one.

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  8. Wow. I'm not even sure what to say here. What a douche bag. That's all I've got.

    At the very least, go on ratemymd.ca, and write a scathing review. Or even better- report him to the College of Physicians. What a jerk.

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    1. That's a great idea. My mother suggested at least telling my OB about him.

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  9. Holy crap. If I ever get pregnant, make sure to tell me who this asshole is so I don't wind up going to him. I agree, you should report him.

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    1. You are in Toronto too so you could end up there... i'm at mount sinai which is usually really good.

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  10. I am absolutely dumbfounded by this "advice." I don't even know what to say. This doctor sounds like a complete monster.

    I'm also of advanced maternal age and it was never suggested to me that I needed an amniocentesis right off the bat. I was given the (much more reasonable) option of having the blood test screening and if that showed an elevated risk I would have then been advised to have an amnio done. But it was never shoved down my throat. And I certainly wasn't given such a bullshit lecture about genetic abnormalities. I'm enraged, and I agree with what others have said about reporting his ass to the College of Physicians.

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  11. Oh my god... I'm sorry to be reading this so late in the game. But for what it's worth: Holy douchebag alert. This guy should seriously be complained about, officially, and reported. That bedouin woman knew a lot more about disabled children than he does, clearly, and he should seriously think before spouting out all this crap about how offensive it comes across. UGH. I'm sorry you had to deal with that when you should be getting excited and happy.

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