Interesting statistics

[eidsvold]

A friend of mine in Australia is doing a masters studying - prenatal testing, and termination of pregnancy - still working out what she wants to focus on. She sent me an email this morning and I was surprised what she had discovered already. Each time i read the statistics I almost cry or get very very angry by what I read.

This email told me of some studies she had been reading - one which stated that 85% - 98% of elective terminations for prenatal diagnosis of Down Syndrome - which decreases to about 70% where the mother has contact with families who have children/a child with Down syndrome. I think that says an enormous amount about fear of disability and the unknown , reacting to negative stereotypes etc.

This one shocked me - a UK study found that 15% of obstetricians believed that parents who had access to prenatal diagnosis and elected to allow a disabled child to be born should bear the responsibility of some of the financial 'cost' to the community.

Also ,many of the medical journals talk in terms of cost benefit analysis , ie , it costs $15 000 to detect a child with CF , but benefit in not having to provide lifetime treatment of $100 000 (Howard Cuckle), therefore , should be encouraged.( termination that is)

Finally that medical insurers in the US were considering withdrawing health insurance for prenatally diagnosed conditions.

Totally disgusting eidsvold. I have a friend who has a chid with Down's syndrome. It was picked up antenatally and the operating theatre was booked automatically. She had to cancel it three times!!!! Not becuase she kept changing her mind- she was always going to keep the baby, just becuase noone could believe it. It did make me think because when I have antenatal tests I know that unless a condition whoich was incompatible with life was revealed (ie something like anencephaly) then I would want to keep the baby. I would have a test for preparation, it didn;t even occur to me that it would then be assumed that I would want a termination.

And to put it in financial terms- disgusting.

i thought you might find this interesting jimjams... We had our dd's heart condition picked up antenatally and decided that no matter what the fetal heart condition showed we would keep the baby.

When it showed a heart condition almost synonymous with Down syndrome - I refused an amnio - for a number of reasons. The fetal cardiac specialist simply asked me if having an amnio would change the outcome - and I said no to which he was most supportive of my decision not to have one - I was most suprised thinking like your friend that I would have to fight for my right not to have an amnio.

As you are aware - we found out for sure three days after she was born that dd has down syndrome. BUT nothing has changed and in fact i think of her in terms of helping break down the misconceptions and prejudices of people. We were more prepared for the heart condition than down syndrome but as I am sure - you learn as you need - you learn as you go along but at the end of the day - they are just kids!!

I also find recent attitudes towards disability disgustable. Between DS1 and DS2 I visited a friend who is also a retired midwife/HV. Her neighbour had just had a downs child and she spent some time opining on how terrible it was for her other children and 'all because she refused to have the tests we offered'.
I ask you. I was shocked then, but have heard as bad since. I couldn't have an amnio with DS2, as I had already miscarried his twin, but I wouldn't have had one anyway. I was actually relieved to be getting out of this test without argument.

Droile - the number of medical staff who asked me after dd was born whether I had had an amnio or knew she was down syndrome before she was born. I said no and then pointed out the number of healthy 'normal' babies miscarried through needless amnio testing. They also asked whether I had the triple/double/quadruple test also. I simply told them that I was not prepared to put my faith in a blood test that was at best 48% accurate. That usually shut them up - i suspect they were surprised I had done my homework regarding testing.

I'm horrified at Jimjam's friend's experience - I think the assumption that a positive test result should automatically lead to termination is appalling.

I think every prospective parent should be given enough information to enable them to decide for themselves whether to have the tests done or not, and what course of action is appropriate for them.

We opted not to have any antenatal anomaly tests done. We felt that we would deal with any problems if they arose rather than spending the pregnancy looking for problems. I got some very surprised reactions from friends/acquaintances though when I said I hadn't had any scans - they seemed to assume that everyone automatically had a scan rather than it being a matter of choice.

Eidsvold, it is so sad the way "disabled" children are thought of as expendable. To put it in terms of cost is appalling!

My youngest sister has Down Syndrome, and a particularly difficult heart defect. My mom refused all prenatal tests including ultrasound/sonogram. She never would have aborted, even if she knew.

When I was pg with my dd, I was absolutely hounded to get testing done. In part because my sister has Down's but also because DH has a genetic disability. He is at times quite physically hindered. They were so after me to get the triple screen done, and I said the same thing you did, why bother with a test with minimal accuracy that may only scare me for no reason? I had to actually sign a stack of papers confirming that after much "education" I was declining the test.

I also had to fend off the genetic counselor when she wanted to do an amnio to check for both things. I asked her what the purpose would be, and she said "so you can be prepared and have choices". I said, "what choices would those be?" Of course the answer was whether or not to "electively terminate" or in other words abort my child for my own convenience. I said it wouldn't be an option in our minds in any case, no matter what the tests showed and to forget it. She asked me whether I'd be prepared for the trouble of dealing with a disabled family member. Honestly! I looked at her in disgust and said "You're right, it IS a bit of trouble. Why don't I just nip off and shoot my husband? That would take care of things".

oh corbin - I dread to think what will happen when we decide to have no 2 child - Not only will I be over the magic 35 y old marker but dd with heart defect and down syndrome ... However - having dealt with medical profession - during pregnancy and dd's health care - feel much more empowered to do my own research and make my own choices and to say NO.

You would probably not be surprised to hear that dh and I were offered genetic counselling about three days after dd was born ( day down syndrome was confirmed) for when/if we decided to have no 2. I said I did not need it for no 1.

One of my friend's research papers will focus on - perhaps...
on compliant behaviour of women in antenatal setting , and the idea of informed compliance vs informed consent ( difference being , women just accepting what the medical professionals advise , as opposed to actually understanding what choices are available and actively seeking a particular path.

I am very interested in what she sends me to read and look at and I find what I can for her. It should be an interesting process.

It makes me wonder how less rich our society would be without children like my little cheeky monkey.