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Parents and doctors see congenital disorders differently


Dr.Henderson

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Title of the article is the title of the thread: http://www.cbc.ca/news/health/story/2012/07/23/chromosomal-anomalies.html

 

Interesting read for sure. The part that I found disturbing was:

 

Parents reported being told:

 

Their child was incompatible with life, 87 per cent.

Would live a life of suffering, 57 per cent.

Would be a vegetable, 50 per cent.

Would live a meaningless life, 50 per cent.

Would ruin their marriage, 23 per cent.

Would ruin their family, 23 per cent.

 

Now some of those a doctor/healthcare provider is qualified to comment on based on evidence, but what do you think about telling a patient that carrying out a pregnancy will ruin their marriage or their family?

 

As a parent myself, I'd be outraged if someone told me that a child, with or without a congenital disorder, would ruin my family or marriage. Suggesting it may put strain on relationships- sure- making a patient aware of complications, emotions, etc sure- but I feel that telling someone it will outright ruin their marriage or family is going a bit far. Thoughts?

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Title of the article is the title of the thread: http://www.cbc.ca/news/health/story/2012/07/23/chromosomal-anomalies.html

 

Interesting read for sure. The part that I found disturbing was:

 

 

 

Now some of those a doctor/healthcare provider is qualified to comment on based on evidence, but what do you think about telling a patient that carrying out a pregnancy will ruin their marriage or their family?

 

As a parent myself, I'd be outraged if someone told me that a child, with or without a congenital disorder, would ruin my family or marriage. Suggesting it may put strain on relationships- sure- making a patient aware of complications, emotions, etc sure- but I feel that telling someone it will outright ruin their marriage or family is going a bit far. Thoughts?

 

Well since its based on recounted parental reports, I don't think you can accurately say that's what these people were being told, only what they remember hearing during a very stressful conversation.

 

They may have been told something quite different and merely interpreted it that way.

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Well since its based on recounted parental reports, I don't think you can accurately say that's what these people were being told, only what they remember hearing during a very stressful conversation.

 

They may have been told something quite different and merely interpreted it that way.

 

That's what I was thinking as well. I can't imagine a doctor saying something like that to patient directly- I would agree that perhaps they said something that the patient construed to mean it would ruin their family/marriage.

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Probably some recall error/bias on the parents part.

 

However, I found the next line interesting:

The most common negative comment made by parents was about health care providers who didn't see their baby as having value, such as referring to a baby as a "lethal Tee-18," or an "it."

 

Just shows how important communication is in a physician-patient relationship in terms of how a person perceived the care they're receiving.

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  • 2 weeks later...

I find it interesting that they only seemed to focus on the parents who decided to go ahead with the births and didn't get the input from those who terminated.

 

I think that terminating could also cause a lot of stress in a marriage/family. Having had 3 miscarriages, I was absolutely devastated each time even though there is a chance that the fetus a could have had an abnormality. It's hard to get closure when you wonder about the "what ifs" and personally caused me a lot of depression, which caused problems in my marriage and family and in my case I didn't have a say. If I were forced to chose? would I have to deal with guilt on top of grief? Would I feel like a coward for not stepping up to the challenge of caring for my child?

 

I don't know how I WOULD react and what choice I would make as a parent but it would be good to hear about th consequences of having the child as well as NOT having the child.

 

A friend of my is a grief counsellor and he tells me that he is surprised at how many of his patients were women who had abortions (both for medical or non medical reasons)* which I guess shows how the effect can ultimately be the same in the end.

 

* don't take this to be a pro-life vs pro choice debate - I think it's a very difficult and personal decision and unless you've been in that position (which I haven't) then there is no way to know - I just thought it would be interesting to look at th negative and positive potential outcomes for both decisions.

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I can't remember where I read it, but having a disabled child puts a HUGE strain on a marriage.

 

Lots of men leave the household when the kid is disabled, because mothers tend to love their child no matter what. The men need a reason to love it - something of themselves reflected in the child. To be father to a disabled child may conjure feelings of inadequacy and failure in the father, who would rather be rid of it than continue to be reminded of how he failed.

 

Not to mention the financial and emotional stress placed upon relationships when a child is disabled. Heck, perfectly well children are hard enough to take care of.

 

It's also interesting to note that the news story does not specify if they surveyed both mothers and fathers, or only the mothers. There is certainly a different maternal instinct that kicks in regardless of the health of the baby that fathers just don't have.

 

There is no objective account of how the doctors broached the subject of poor prenatal test results to the parents in this article, but patients should be told the truth about life with children with these disorders. It's hard. It's thankless. It's a huge strain on every fibre of one's being. The parents will never see it move on and become something independent in life, or have children of its own. One must balance that with the pleasure in knowing that the parents are caring for a life that can forever not function without them.

 

And I absolutely hate comments about how doctors are playing god, or are biased or whatever, and that every parent who has a bad prenatal screening result should just buck up and birth the kid and take care of it. They're the first people who'd get an abortion if their results showed an abnormality.

 

This is an understatement. The number of couples which abort the pregnancy upon learning their child will have Down Syndrome, for example, is ridiculously high.

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Yeah, the study was hardly air-tight. Doesn't indicate potential gender disparities, SES disparities, etc among those surveyed, and already those surveyed were only those who carried through with it and were part of a support group. The results, even if those surveyed had an accurate perception of reality, could not be generalized.

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