I've been thinking along these lines too... I think there is generally speaking a low level of tolerance in our society, and in the medicalised model of care that most women birth in, to anything other than the perfect product. I've been witness sadly to women and families being badgered and attacked personally for either choosing to go no further with testing, or declining testing despite a family history or an initial diagnosis. It's terrible to watch, and I can't imagine how those families must feel when it's made clear to them that the 'system' feels that their baby would be better off if it wasn't born...
I have a friend with a baby with Down's syndrome, and a midwife said to her after the birth "what a pity you didn't have the testing". The reality is that she did have some testing, and made a very definite decision to go on with the pregnancy, and to love her baby no matter what. But the implication was that it would have been so much better if she'd had some tests and had an abortion. What a terrible shame Tania (who thinks any, lots, or no testing is great, as long as the family are ok with what the outcome might be, either way). -----Original Message----- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] On Behalf Of Megan & Larry Sent: Wednesday, 7 December 2005 5:32 PM To: [email protected] Subject: RE: [ozmidwifery] Whilst we are on the topic of early screening.... I agree Jo (how are you), To add to this I also wonder about the baby born healthy but along lifes journey develops an illness or whatever for which there is no cure. Healthy at birth is no guarantee for anything. My least favourite saying to pregnant women is " as long as its healthy..." What a dumb thing to say ( I know good intentions)but what if its not healthy? Will we love the child less or does your love stop when your child develops brain damage from, say, a car accident? A family at our school are grieving for the loss of their 3 yr old daughter who battled her short life with cancer, was she "healthy" at birth? There are so many possibilities, and I agree, tests are good if we understand what can come from them, as long as we know their limitations too. Cheers Megan (exhausted from present shopping) -----Original Message----- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED] On Behalf Of Jo Bourne Sent: Wednesday, 7 December 2005 4:58 PM To: [email protected] Subject: Re: [ozmidwifery] Whilst we are on the topic of early screening.... One of the things I keep thinking about with this and the other screening tests that have been discussed is that not all birth defects have a genetic origin. Couples that feel strongly that they would not continue a pregnancy can do all these tests, feel reassured, and get to their 20 week ultrasound, or the birth of their child only to find that something is anywhere from slightly to very wrong with their baby. Getting an all clear on downs or CF does not mean you won't find your baby has an extra finger, webbed fingers, club foot, cleft palate or a radically malformed heart. I think the education given to consumers about what tests there are, what is and is not covered, what results will mean, what you might want to do about the results etc, is woefully lacking and makes the shock of getting a bad result so much worse. I think the availability of testing is generally a good thing, but there should be far better education about the tests and the conditions they are for that allow people to make informed choices of their own about whether to test in the first place and what to do if they do test and get a bad result. At 8:22 AM +1100 7/12/05, Helen and Graham wrote: ><http://www.smh.com.au/news/national/babys-sex-test-offers-new-hope/200 >5/12/06/1133829597883.html>http://www.smh.com.au/news/national/babys-se >x-test-offers-new-hope/2005/12/06/1133829597883.html > >Baby's sex test offers new hope > >By Julie Robotham Medical Editor >December 7, 2005 >AUSTRALIAN doctors have identified the sex of 22 foetuses as early as five weeks into pregnancy from cells taken from their mother's cervix, in a "proof of concept" experiment they say could lead to improved tests for conditions such as Down syndrome and cystic fibrosis. > >Gab Kovacs, professor of obstetrics and gynaecology at Melbourne's Box Hill Hospital, said women would welcome the opportunity to know their foetus was healthy as early as possible during pregnancy. > >Where an abnormality was detected and the woman chose termination, this would involve fewer risks and medical complications if it could be done earlier. At present, the earliest test that can determine definitively if a foetus is affected by Down syndrome is chorionic villus sampling, in which placental cells are cultured around 11 weeks of pregnancy. But the test is invasive, and occasionally triggers miscarriage of healthy foetuses. Amniocentesis, conducted later in pregnancy, has similar drawbacks. > >Professor Kovacs's initial study, reported this week in the Australian and New Zealand Journal of Obstetrics and Gynaecology, was carried out in women who were having abortions. The scientists compared the sex of the foetus identified from foetal cells in the women's cervical mucus with the sex chromosomes they found in the placenta after the termination. The results matched in all cases. > >The next phase would be to conduct a larger study in women who were continuing their pregnancies, Professor Kovacs said. This would provide extra information about the reliability of the method, which uses polymerase chain reaction (CVS) technology to confirm the cells are not from the mother and the sex of the foetus. "We have ethics committee approval to do that in an antenatal population," Professor Kovacs said. Detecting abnormalities would be no more difficult technically than determining sex, he said. > >The trial would also confirm the technique - which Professor Kovacs described as causing "less discomfort than a Pap smear" - was safe for the mothers and babies. But it would be at least five years before it could go into widespread use. > >Andrew McLennan, a consultant in foetal medicine at Royal North Shore Hospital, said previous attempts to isolate foetal cells had failed, and Professor Kovacs's technology was still at a very early stage. > >If the new technique proved effective, Dr McLennan predicted it would initially be used with more traditional tests. > >A woman whose cervical mucus test showed she was at increased likelihood of having a baby with an abnormality could be referred for amniocentesis or CVS, he said, while women with more reassuring early results might opt not to have further testing. > >Australian statistics show that more than 90 per cent of women whose foetus is diagnosed with Down syndrome choose to terminate the pregnancy. -- Jo Bourne Virtual Artists Pty Ltd -- This mailing list is sponsored by ACE Graphics. Visit <http://www.acegraphics.com.au> to subscribe or unsubscribe. -- This mailing list is sponsored by ACE Graphics. Visit <http://www.acegraphics.com.au> to subscribe or unsubscribe. -- This mailing list is sponsored by ACE Graphics. Visit <http://www.acegraphics.com.au> to subscribe or unsubscribe.
