Re: [ozmidwifery] CF screening
I agree. I have used this article in teaching midwifery. I ask the students to role play it and it really lifts out the message about prenatal testing. Better than me giving a whole lot of statistics. Cheers Jenny Jennifer Cameron FRCNA FACMPresident NT branch ACMIPO Box 1465Howard Springs NT 083508 8983 19260419 528 717 - Original Message - From: Ken WArd To: ozmidwifery@acegraphics.com.au Sent: Sunday, December 04, 2005 4:11 PM Subject: RE: [ozmidwifery] CF screening The article is great, and I wish I'd had it for antenatal visits. So many women think if they have all the tests they'll have a ok baby. We pushed the tests, even though we were supposed to be low intervention. Have the tests if you want, as Robyn says, it doesn't mean you have to terminate. Can anyone tell us if there is pressure following a positive result? -Original Message-From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]On Behalf Of Judy ChapmanSent: Sunday, 4 December 2005 3:13 PMTo: ozmidwifery@acegraphics.com.auSubject: Re: [ozmidwifery] CF screening This article on the birthinternational site is good for decisions re downs, I am sure it could be extrapolated to CF. http://www.birthinternational.com/articles/dietsch01.html Cheers JudyRobyn Dempsey [EMAIL PROTECTED] wrote: Who says that because testing is available, that you have to terminate? The testing allows choice. My sister has made friends who have children with CF, they knew they carried the gene and took the attitude " I know what to do with CF kids, it doesn't bother me". On! ce again, I read judgment. Testing allows choice.the choice to terminate, or the choice to prepare for a child with extra needs. Robyn D Do you Yahoo!?Yahoo! Music: Vote on Who's Next and see your favourite band live Internal Virus Database is out-of-date.Checked by AVG Anti-Virus.Version: 7.0.344 / Virus Database: 267.11.9/70 - Release Date: 29/09/2005
Re: [ozmidwifery] CF screening
In my experience, both professionally and personally, yes, there certainly is pressure to terminate once given a positive result. I do know mothers of DS and other syndrome babies who have the test next time round, NOT to terminate, but to prepare against the shock at birth. This is certainly a valid reason for some, but many doctors in particular cannot understand anyone continuing a pregnancy if the baby were to be 'defective'. It is a brave couple indeed who continue with their pregnancy in the face of this. There is a brilliant book "Expecting Adam" by Martha Beck which is the story of one couple in this situation. Sue "The only thing necessary for the triumph of evil is for good men to do nothing"Edmund Burke - Original Message - From: Ken WArd To: ozmidwifery@acegraphics.com.au Sent: Sunday, December 04, 2005 2:41 PM Subject: RE: [ozmidwifery] CF screening The article is great, and I wish I'd had it for antenatal visits. So many women think if they have all the tests they'll have a ok baby. We pushed the tests, even though we were supposed to be low intervention. Have the tests if you want, as Robyn says, it doesn't mean you have to terminate. Can anyone tell us if there is pressure following a positive result? -Original Message-From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]On Behalf Of Judy ChapmanSent: Sunday, 4 December 2005 3:13 PMTo: ozmidwifery@acegraphics.com.auSubject: Re: [ozmidwifery] CF screening This article on the birthinternational site is good for decisions re downs, I am sure it could be extrapolated to CF. http://www.birthinternational.com/articles/dietsch01.html Cheers JudyRobyn Dempsey [EMAIL PROTECTED] wrote: Who says that because testing is available, that you have to terminate? The testing allows choice. My sister has made friends who have children with CF, they knew they carried the gene and took the attitude " I know what to do with CF kids, it doesn't bother me". On! ce again, I read judgment. Testing allows choice.the choice to terminate, or the choice to prepare for a child with extra needs. Robyn D Do you Yahoo!?Yahoo! Music: Vote on Who's Next and see your favourite band live No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.362 / Virus Database: 267.13.10/190 - Release Date: 1/12/2005
Re: [ozmidwifery] CF screening
This article on the birthinternational site is good for decisions re downs, I am sure it could be extrapolated to CF. http://www.birthinternational.com/articles/dietsch01.html Cheers JudyRobyn Dempsey [EMAIL PROTECTED] wrote: Who says that because testing is available, that you have to terminate? The testing allows choice. My sister has made friends who have children with CF, they knew they carried the gene and took the attitude " I know what to do with CF kids, it doesn't bother me". On! ce again, I read judgment.Testing allows choice.the choice to terminate, or the choice to prepare for a child with extra needs.Robyn D Do you Yahoo!? Yahoo! Music: Vote on Who's Next and see your favourite band live
RE: [ozmidwifery] CF screening
The article is great, and I wish I'd had it for antenatal visits. So many women think if they have all the tests they'll have a ok baby. We pushed the tests, even though we were supposed to be low intervention. Have the tests if you want, as Robyn says, it doesn't mean you have to terminate. Can anyone tell us if there is pressure following a positive result? -Original Message-From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]On Behalf Of Judy ChapmanSent: Sunday, 4 December 2005 3:13 PMTo: ozmidwifery@acegraphics.com.auSubject: Re: [ozmidwifery] CF screening This article on the birthinternational site is good for decisions re downs, I am sure it could be extrapolated to CF. http://www.birthinternational.com/articles/dietsch01.html Cheers JudyRobyn Dempsey [EMAIL PROTECTED] wrote: Who says that because testing is available, that you have to terminate? The testing allows choice. My sister has made friends who have children with CF, they knew they carried the gene and took the attitude " I know what to do with CF kids, it doesn't bother me". On! ce again, I read judgment. Testing allows choice.the choice to terminate, or the choice to prepare for a child with extra needs. Robyn D Do you Yahoo!?Yahoo! Music: Vote on Who's Next and see your favourite band live
RE: [ozmidwifery] CF screening
True. But you get false positives or false negatives, correct? So there is a chance that you get prepared for a CF child, and get a healthy one, or prepare for a healthy child and give birth to a sick baby. But of course, theres a greater chance that a test is correct. Anyway, the test is out there, if the country can afford it they might as well make it routine as long as women are not pressured into taking it and are the last ones to make an informed decision. Vedrana From: owner-ozmidwifery@acegraphics.com.au [mailto:owner-ozmidwifery@acegraphics.com.au] On Behalf Of Robyn Dempsey Sent: Saturday, December 03, 2005 7:29 AM To: ozmidwifery@acegraphics.com.au Subject: [ozmidwifery] CF screening Who says that because testing is available, that you have to terminate? The testing allows choice. My sister has made friends who have children with CF, they knew they carried the gene and took the attitude I know what to do with CF kids, it doesn't bother me. Once again, I read judgment. Testing allows choice.the choice to terminate, or the choice to prepare for a child with extra needs. Robyn D
Re: [ozmidwifery] CF screening
I agree - please don't make judgements in the case of inherited disorders. I too carry a faulty gene (not CF)which has affected all 3 of my children. While I love them all dearly and do not regret their lives, I do know that I would NOT have chosen this path willingly. I was not able to test for the first 2, did test for the 3rd, but was informed (wrongly as it turns out) that females are not affected. Knowing several families with CF and the battles they face both in testing issues and in raising affected children I could not judge anyone who did not feel that they wanted to continue with a pregnancy if the child were to have a serious problem. It is true that all lives are meaningful and that all children should be valued, sadly society still has a very long way to go before that ideal is commonplace practice. I have met with much ignorance and discrimination regarding my kids, their lives are compromised, they will always require care. They have taught me much and have touched many lives, those who take the time to know them value them deeply, however, not everyone does. I have met many angels and many ogres! Raising such children takes a huge commitment physically, emotionally and financially,and you fight battles every day to make their world a better place. I have often cared for women who have chosen to terminate a child with a genetic fault, as part of my job, and I pride myself on giving them the best care I can, without judgement on their decision. I figure they have had a hard enough time coming to that place without that. I have also had the great joy of caring for women who have chosen to continue regardless. With all of these I share some of my own experience so that they will know that others have found themselves in similar circumstances. There is no 'right' or 'wrong' answer in such situations. People have to come to their own choice according to their own circumstances, beliefs and consciences, then they have to find peace with that choice, either way it is not easy. Sue "The only thing necessary for the triumph of evil is for good men to do nothing"Edmund Burke - Original Message - From: Robyn Dempsey To: ozmidwifery@acegraphics.com.au Sent: Friday, December 02, 2005 7:06 PM 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 testingdon't judge unless you've been in the situation. Robyn Dempsey No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.1.362 / Virus Database: 267.13.10/190 - Release Date: 1/12/2005
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 wouldbe 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 DempseySent: Friday, December 02, 2005 10:07 PMTo: ozmidwifery@acegraphics.com.auSubject: [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 testingdon't judge unless you've been in the situation. Robyn Dempsey
Re: [ozmidwifery] CF screening
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 wouldbe 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 DempseySent: Friday, December 02, 2005 10:07 PMTo: ozmidwifery@acegraphics.com.auSubject: [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 testingdon't judge unless you've been in the situation. Robyn Dempsey
RE: [ozmidwifery] CF screening
If it was me who triggered your responses I dont have a problem with anyone who choses to have an abortion for whatever reason and I live my life trying not to judge anyone or anyones choices. I was just trying to imagine how I would feel if I was a sick child who read an article about how a test is available, which wasnt there at the time I was born. Im sure Id be thinking about how miserable my parents actually are because of me, since some would take the test and have an abortion because of a child just like myself and would wonder whether my mom would have had an abortion with me had she lived in a time when a test was available. But this is just me and my thoughts. On the other side, Im also aware that caring for a sick child usually means giving your life as it was away, that it requires a huge commitment as you said and that its not something anyone would wish for, either for him/herself, or for a child. Vedrana From: owner-ozmidwifery@acegraphics.com.au [mailto:owner-ozmidwifery@acegraphics.com.au] On Behalf Of Susan Cudlipp Sent: Friday, December 02, 2005 12:57 PM To: ozmidwifery@acegraphics.com.au Subject: Re: [ozmidwifery] CF screening I agree - please don't make judgements in the case of inherited disorders. I too carry a faulty gene (not CF)which has affected all 3 of my children. While I love them all dearly and do not regret their lives, I do know that I would NOT have chosen this path willingly. I was not able to test for the first 2, did test for the 3rd, but was informed (wrongly as it turns out) that females are not affected. Knowing several families with CF and the battles they face both in testing issues and in raising affected children I could not judge anyone who did not feel that they wanted to continue with a pregnancy if the child were to have a serious problem. It is true that all lives are meaningful and that all children should be valued, sadly society still has a very long way to go before that ideal is commonplace practice. I have met with much ignorance and discrimination regarding my kids, their lives are compromised, they will always require care. They have taught me much and have touched many lives, those who take the time to know them value them deeply, however, not everyone does. I have met many angels and many ogres! Raising such children takes a huge commitment physically, emotionally and financially,and you fight battles every day to make their world a better place. I have often cared for women who have chosen to terminate a child with a genetic fault, as part of my job, and I pride myself on giving them the best care I can, without judgement on their decision. I figure they have had a hard enough time coming to that place without that. I have also had the great joy of caring for women who have chosen to continue regardless. With all of these I share some of my own experience so that they will know that others have found themselves in similar circumstances. There is no 'right' or 'wrong' answer in such situations. People have to come to their own choice according to their own circumstances, beliefs and consciences, then they have to find peace with that choice, either way it is not easy. Sue The only thing necessary for the triumph of evil is for good men to do nothing Edmund Burke - Original Message - From: Robyn Dempsey To: ozmidwifery@acegraphics.com.au Sent: Friday, December 02, 2005 7:06 PM 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 testingdon't judge unless you've been in the situation. Robyn Dempsey No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.1.362 / Virus Database: 267.13.10/190 - Release Date: 1/12/2005
