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Dawnie
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Bookswithtea wrote:
If you take the AFP test and Downs or SB show up as a possibility, then do you feel comfortable taking an amnio to confirm the results? Its not the AFP I worry about. No risk involved. But Amnios carry a risk of miscarriage, and I am nervous about that. Does an OB even consider AFP tests conclusive without another testing confirming or denying the original results?
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I've refused the AFP test on the same grounds...I don't want to have an amnio and risk miscarrying a perfectly healthy baby. So what do you do if the AFP test shows a problem and you don't want to have the amnio? I guess that being prepared for a baby w/ Downs or SB wouldn't cause any problems (other than maternal stress!) and you'd be pleasantly surprised if the baby turned out to be healthy?
Dawn
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teachingmom
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Dawnie wrote:
Bookswithtea wrote:
If you take the AFP test and Downs or SB show up as a possibility, then do you feel comfortable taking an amnio to confirm the results? Its not the AFP I worry about. No risk involved. But Amnios carry a risk of miscarriage, and I am nervous about that. Does an OB even consider AFP tests conclusive without another testing confirming or denying the original results?
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I've refused the AFP test on the same grounds...I don't want to have an amnio and risk miscarrying a perfectly healthy baby. So what do you do if the AFP test shows a problem and you don't want to have the amnio? I guess that being prepared for a baby w/ Downs or SB wouldn't cause any problems (other than maternal stress!) and you'd be pleasantly surprised if the baby turned out to be healthy?
Dawn |
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Kim,
I'd be interested in hearing your answer to this, since I'm confused by this too. I took the AFP test for only the pregnancy of my oldest dd. The results were a false positive for Downs Syndrome. I went through the pregnancy with extra anxiety that was completely unnecessary, and decided I'd never do it again.
I absolutely refused to have amniocentesis because I was told that the chance of miscarrying was around 2 percent. Well, I was also told that something like 1 in 300 pregnancies at my age back then (30) resulted in the birth of a child with Downs. That means that if all 300 women had an amnio test looking for that one child with Downs, 6 babies would die in the process!!! So, no I don't feel comfortable at all with amniocentesis.
Given that, how would the AFP test be helpful for someone like me? Or are you saying that IF the AFP test comes back with the readings showing possible Spina Bifida, it is worth the risk of amnio in that case? I had a friend in college with SB, so I do realize how completely that disability affects a person's life, but is it worth the risk of losing the baby?
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Kim F
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I don't do amnio either with my irritable uterus. With the new 3d and 4d ultrasounds I think it would be rare to miss SB with both an AFP and high definition u/s. Plus we usually do the AFP at the early end of the window so if there is a blip we can re-do the blood test. You do need to be pretty certain of your dates.
I guess already having a disabled child I no longer get that anxiety. We have worked with a lot of different disabilities and at this point figure odds are fair we may have another.
The numbers are different for Downs than for SB fwiw. And the prep would be different for SB since you wouldn't do a csection unless you were really sure but you would WANT to do one for SB definitely.
In the end its a personal call of course. I also take ten times the normal amt of folic acid as a preventative since we have had a neural tube defect already. Its water soluable so you can't overdo. And cheap.
Kim
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alicegunther
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MarilynW wrote:
| We were at a family dinner dance last night - and people found out we were having #5. At one point during dinner someone turned to me and said "Will you be done after this?" - there was an expectant hush - and then my dh - who is a fairly reserved British man - said without batting an eyelid - "we are maybe half way there" |
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God bless him! That is a great response!
I've been getting the same question for years now. My answer is always the same: "I certainly hope not! I'm hoping God will bless me again someday!"
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Kim F
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Alice's post reminded me too that there has been significant progress made with in utero treatment for SB. That wasnt an option yrs ago. They dont "fix" SB in utero but they can halt damage where it is. Sometimes they opt to deliver early also if hydrocephalus (a simultaneous disorder) is progressing. Treating that successfully means the difference between a normal intellect and potentially severe developmental issues. Not mention difficulty with vaginal birth.
Kim
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kingvozzo
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Elizabeth wrote:
| At twelve weeks, it is possible to almost entirely rule out Down Syndrome by measuring the nuchal fold during a sonogram. This means of assessment isn't reliable at the 20 week sonogram.Twelve weeks is the window of oppoprtunity. Lots of people who would never abort find the information useful. If I were having a a baby with Down Syndrome, that information, early in the pregnancy, would help me gather support and resources. |
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Saw this
article at CNN--thought I would pass it on.
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SaraP
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Wow. I have a really different perspective on this.
I refuse all routine prenatal testing of the baby - even ultrasounds.
This is why:
A few years ago my sister was carrying a baby that some of her docs thought might have a chromosomal abnormality. They were wrong (although he was stillborn at 18 weeks anyway  ), but although my sis was adamant that she would not abort they kept pressuring her and because the defects they suspected were untreatable they essentially wrote the baby off as a patient and I think his standard of care decreased considerably.
Also, as others have mentioned, most prenatal testing comes with risk. Amniocentesis is the most risky and somewhere between 1 in 200 and 1 in 50 women who has an amnio will miscarry just as a result of the test. And even sonograms aren't definitely safe. Sonograms do cause changes in cells in culture (little bubble-like formations called cavitations) and although no one knows what, if any, long-term effects these changes have both FACOG and the NIH advise against using sonograms for routine screening.
The AFP tests (triple screen and quad screen) are safe in and of themselves, but because of the high rate of false positives they open the door to a lot of tests that are not always safe and I am not convinced that in utero diagnosis of even the problems that can be addressed befoe birth usually improves outcomes. In utero surgery for spina bifida is still experimental and controversial because it comes with a high risk of very premature birth and most of the newer studies have found that that c-sections are not necessarily safer for babies with SB unless they are breech (see this 2006 fact sheet from the March of Dimes). With regards to Down's Syndrome nothing can be done in utero and all of my babies have been born within a 10 minute transport to a hospital that could handle the complications that can come with Down's without difficulty.
I know this is something that different people feel differently about and I don't think there is one, right answer, but I am confident that if God gives my DH and I child with special needs He will also give us special graces to meet those needs and I don't see the sense in borrowing trouble or exposing my unborn babies to potentially risky tests without there being very clear benefits to doing so.
Sorry for the multiple edites - too much going on here today!
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Kim F
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We are not within a short transport to a children's hospital so it would benefit us greatly to know. Outside of large city hospitals many Drs never see an SB patient and are not familiar with protocol to protect the lesion from infection etc. Plus I have a tremendously increased risk of recurrence.
I truly am not as worried about u/s which has possible, but as yet undocumented, problems as I am about spina bifida which left my son blind in one eye, a parapalegic with a neurogenic bowel and bladder,hydrocephalus,severely latex allergic, and the recipient of annual surgeries. His entire life is wrapped up in coping with the multiple effects of this relatively small defect of the spine so its not hypothetical to me. Its a whopper of complications.
After working with SB kids for a lot of years I can tell you that early treatment makes a world of difference. And there is a LOT of treatment necessary right at birth. The first surgery must be done within 24 hrs and shunting usually happens in the next week. It can totally overwhelm an unprepared family. Course some people don't react well to the diagnosis before they can bond with the baby either.
I guess we have taken a proactive approach to this. I don't wait to see if they can prove a treatment will be 100% effective. It was 20 YEARS after the Lancet study first came out that the US recommended folic acid to pg women. We had 3 more children after Colin before US drs were prescribing it. I am very glad I had put myself on it prior to that. We also were blessed to have some cutting edge Drs and did take some surgical risks, most of which we dont regret. Thing is it was take a chance that we could see big improvements or dont and be guaranteed massive disability.
Our take is that life is not without risks. In this case the risks of not knowing this particular thing which has already affected us so greatly outweigh the risk of a non-invasive test or two. Now being of an age where Downs is quite possible I want to be prepared to jump in early if necessary for that too. I am a "knowledge is power" kinda person. That said my dearest friend locally does no testing and homebirths alone. It works for them. They havent had any problems either. So I guess you could either say that these problems are rather abstract for them since they haven't hit home OR that God leads us to do what our families need us to. I could probably argue for either option so it IS personal in the end.
I should add that I am very hands off in the absence of problems. We homebirth naturally and rarely see a Dr outside of Colin's docs.
Kim
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teachingmom
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Hi Kim,
I'm glad to understand that you weren't suggesting amniocentesis and there are other ways to confirm possible SB after the AFP test.
Thanks for sharing your story and your perspective on prenatal testing. It gives me much food for thought for the future.
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Becky Parker
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This is all very interesting to me as I am pregnant with my 5th. Thanks for the informative discussion! I just want to add my dh's response to people who ask "how many more" or some-such question. We have a full size van so he very seriously says "well, the van will hold 9". It usually brings a giggle, but nobody presses the question any further. My df is an ob nurse. She says the nurses/doctors are always amazed when a woman comes in with her 4th pregnancy (or more) and it's all from the same man! They don't bat an eye when there are multiple husbands/boyfriends involved! This amazes and really upsets me. What's the world coming to?! The other interesting thing she says is that if a woman delivers a baby and she is 40 or older it's big news and a lot of "talk" happens. (THey even have a nickname for us which she wouldn't disclose to me.) BUT, when it is someone in their 40's and it is their first child it is a major celebration! I don't get it. It is still a precious child whether it be the first or the twelfth! You can tell I'm a little "keyed up" about this issue. We just made the announcement that we are having our 5th to friends and family. I'm amazed at peoples responses. One "friend" even said "You're nuts!". I guess I wont send her a birth announcement!
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SaraP
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Kim F wrote:
| So I guess you could either say that these problems are rather abstract for them since they haven't hit home OR that God leads us to do what our families need us to. I could probably argue for either option so it IS personal in the end. |
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I agree.
Kim, I hope my post didn't come across as criticizing the way your family does things. Each of us has a unique set of circumstances and a unique temperment and I didn't mean to imply that I thought everyone should have the same approach to prenatal testing that I do.
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Kim F
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<<I hope my post didn't come across as criticizing the way your family does things. >>
Not at all. Its complicated, as evidenced by my rambly explanation. Parenting in general is I guess!The longer we do it the less I know for sure.
As to the rude comments, the one that tempts me most is "Better you than me!" to which I have been sorely tempted to say "Yes, it is." ; )
Kim
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Sandyone
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Kim F wrote:
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As to the rude comments, the one that tempts me most is "Better you than me!" to which I have been sorely tempted to say "Yes, it is." ; )
Kim |
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To this one, I actually have been known to say, "I think so, too!" The first time I said it, the words just kind of jumped out without my knowledge or permission. I also like "You got that right!"
This information about the AFP is all so interesting. I've always refused that silly test. I had no idea that c-section is safer (I will go read that other study linked above). Is there something you can say to the doctors that will make them stop pushing for abortion? I was thinking of maybe warning them, "If you mention abortion again, I'll spit on your desk." Spit every time someone brings it up. You can't really assault them, but gosh...do they really have to push the issue so hard?
As for second-rate care for one of these babies...would it be ethical to switch doctors and purge your records of the AFP results? You would know of the results, but the docs wouldn't. That might not be safe, though.
When I was expecting my 3rd child, I just had a feeling that the baby would have Downs Syndrome. It seems that during that pregnancy, I came into a lot of contact with articles and people with DS. I thought God was preparing me. My baby was born pretty pudgy and her fat neck had me worried, but her vigorous nursing settled me down. My friend had had a baby shortly before and she'd had a nagging feeling about a DS baby. We must have been reading the same articles! (The American Life League issue on Downs Syndrome was just beautiful.)
Sandy, who really needs to get over to Fireside Chat for an introduction!
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Kim F
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If you discovered positively that you were carrying a baby with SB then the first move would be to contact the nearest SB clinic. They can advise far better than an ob and will help you sort out the medical procedures and the best place to arrange to have them done. If your OB knows the SB clinic is expecting your baby I doubt they will cut any corners on your care.
Kim
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Mrs.K
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Elizabeth, that was hilarious! I laughed out loud so of course my dc come running and I have to hide the screen so they don't read about the Incredible Mr. Foss!
I am very confused by all of this. My ob, who is Catholic pro-life etc. says she hates the afp test and doesn't recommend it as it is so confusing. I have never heard that it is the only way to dx SB.
I also don't understand how 12wks is the window of opportunity for finding out about DS. There are lots of markers for DS in addition to the nucchal fold. 50% of children with DS have heart defects. Other markers like short limbs, splayed toes, the neck etc. remain visible throughout the pregnancy, no?
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SaraP
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So someone asked me this question recently, but the rest of the conversation was so sweet and unexpected that I have to share it:
Mr. X: How old is the baby?
Me: She just turned one.
Mr. X: Are you done?
Me: Oh, no . . . I hope not!
Mr. X: Good. My wife and I have three, but I wish we'd had more and I know a guy down the street who is one of sixteen and his parents have FIFTY grandchildren!
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