Re: [ozmidwifery] CF screening

[Janet Fraser]

I thought the point was that it's a call for routine testing. IMO routine anything is dangerous ground especially since so many prenatal tests have relatively high false positives and some problems are not picked up at all. I've just seen a woman spend the first 20 weeks of her pregnancy having test after test after test as each one threw up a different risk/result only to find out her baby is perfectly fine - as far as she knows until birth! I think that is the stuff we should be more concerned with. I don't think anyone believes it's wrong to test with fully informed consent and a strong desire from the parents but we see too little of that and too much routine testing that's treated as talismanic or prophylactic. Introducing a routine CF test would just be another hoop for parents, another charge to pathology, another wedge inserted between a woman and her baby with whom she can't say she's bonding until medical science gives her the all clear. I'm wary of anything that gives more control to those performing the tests and more stress on consumers, often for no reason. Choosing the test for compelling reasons like a family history, of course, is a totally different matter. J ----- Original Message ----- From: Nicole Carver To: ozmidwifery@acegraphics.com.au Sent: Friday, December 02, 2005 11:03 PM Subject: RE: [ozmidwifery] CF screening Hi Robyn,   I'm sorry if it seemed as though I was judging. I will try to explain what I was trying to say.   It's a very complex decision to make regarding testing, because it implies that you will terminate if the baby has cystic fibrosis. I suppose a pregnancy is only a potential life, as even without any inherited or congenital disorders, and despite all the tests and treatments available, there are no guarantees of a perfect outcome.   I am a Maternal and Child Health Nurse, so know a little about Cystic Fibrosis from working with families who have experienced it. I know that there are varying degrees of severity, with some people living well into their fifties while others don't make it very far at all.   I think it would be hard to terminate a pregnancy for me after having one child with any abnormality as you have a relationship with that child, not the abnormality. Terminating a subsequent pregnancy for me would be a tragic decision to make (not saying at all that I wouldn't make that decision). It would be easier I think if I hadn't had a child because you would not know what you were losing, although you might appreciate what grief you may be avoiding. I hope that your niece and sister do have some joy in their lives, and that your niece's condition improves.   Nicole.   -----Original Message----- From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]On Behalf Of Robyn Dempsey Sent: Friday, December 02, 2005 10:07 PM To: ozmidwifery@acegraphics.com.au Subject: [ozmidwifery] CF screening My niece has cystic fibrosis. She has had over 10 hospitalizations in her 3 years of life. Her mum ( my sister) does the physiotherapy for her every day and night. My niece has to take many preparations as she doesn't absorb fats, which means vitamin deficiencies are common. My niece has a permanent pseudo infection in her lungs, this flares up if she gets a cold, which results in a hospital stay. My sister avoids gatherings ( family), if someone is sick. My sister has had so much time off work because she needed to care for my niece, that she gave up work to look after her. My sister has decided not to have any more children, as she feels 2 with CF would be too hard. ( being able to give to both the attention they need). I'm sure she would opt for the testing........don't judge unless you've been in the situation.   Robyn Dempsey