What do you think of these tests?

[LaLa]

What do you think of AFP and Cistic Fybrosis testing in general? Feel free to vote more then one option if more then one apply

[Piglet68]

I had the AFP/triple screen done. Lots of people say they won't have it done because they wouldn't terminate the pregnancy anyways. Well, I believe that forewarned is forearmed. If my baby did show chances of having Down's or CF I would want to know so I could begin to do thorough research. Also, they are now developing treatments, at least for spina bifida. I saw a show where they operate on the baby in utero and close up the spinal opening. These babies do far, far better than those who didn't get operated on, when they are finally born.

I know the triple screen has a high false positive rate but if you do get a positive they can then do an amnio and/or ultrasound to confirm the diagnosis. While it sucks for the few who turn out to stress over babies who end up normal, I really think this is a better alternative than to hide one's head in the sand and not be prepared. I know that I feel much better by this point in my pregnancy knowing at least a few awful things have been ruled out. Of course I still hope that Emily will be born totally healthy, and there is no guarantee, but I honestly don't worry about it that much, whereas I'm quite sure I would be paranoid by now if I didn't have that reassurance.

I think it is an individual choice, but I hope people make the choices for the right reasons and not just because they don't want to stress themselves out over a possible positive result when this could actually help them and the baby if they knew. I think finding something like this out at the moment of birth could be such a shock to the system that it might compromise early bonding and the whole experience...

JMHO.

[LaLa]

I think we saw the same program about the operation on the baby with spina bifida, but not all, or even a high percentage of babies can be operated on with sucess. It is only if all certain criteria have been met, but it is good to know for those who meet that criteria.

Our doctors told us there is nothing they could do differently if we tested positive. We are young, and we aren't at high risk.
We would not abort a child if it was inflicted with an illness or syndrome, so we choose not to run unecesary tests,
but to each her own.

That is the beauty of pregnancy...it is different for every woman.

[AmyG]

We're not having any of those tests done. I wouldn't get an amnio even if I did get a bad blood test result, so I'd just end up worrying the rest of the time. I can see the benefits of knowing that the baby will have a problem, particularly if it's a problem that will mean the baby will probably die after a few hours, but the risks of an amnio are so high. I've lost a baby before because of natural reasons, and I can't imagine how bad I would feel if I lost one because of an amnio that I had chosen to have.

(I would consider having an amnio much later in my pregnancy, like after 32 weeks or so, if there was a reason the baby needed to come out soon and the doctor wanted to know if the lungs were ready. I just don't want to have contractions when there's no chance the baby would survive.)

[mamamoo]

I just voted that we wouldn't be having these tests run. I don't feel they are bad or good, just a decision each mama has to make for herself. I also wouldn't do anything different if a test was positive, so I don't see thepoint. I did have a very sick baby(my first), and I had all the tests done, and ultrasounds, they didn't find anything, so you just never know what's going to happen anyway. It was so hard not knowing if my son would make it, but it definately did not limit our bonding, I think it strengthened it. I spent every second with him that I could because I didn't know if it would be the last.
BTW he's a happy healthy almost five yr. old now.
JMO-Debi

[Kermit]

My doctor told me that if there was a spinal cord defect, they would deliver me via C-cection, but that most spinal cord abnormalities are found at the 20 week ultrasound. Major defects and I would be turned over to a specialist and deliver in a hospital that could do special surgeries on the infant. Very minor ones that are not caught are not significant enough to make a difference where or how I'd deliver. Other types of abnormalities can also be found on the 20 week ultrasound and if they are serious problems that will not allow the baby to survive, they will not be aggressive in saving a baby that is in danger at labor if the parent does not want that. I won't have an amnio done at this point. If knowing meant they could do something that could change the outcome or my child's future, of course I would want to know IF I could do so without possibly risking a perfect baby's life, but I've asked my doctor and she has not given sufficient reason, in my case, to warrant it. If I was willing to terminate the pregnancy or risk having an amnio, I'd do it, but that's not my situation.

[Viola]

I didn't know there was a test for CF in utero. Is it just one of the things you can do via amniocentcis? I had genetic testing for CF done before I got pregnant, and I'm all in favor of that.

[Piglet68]

I believe if the child has spina bifida a cesarian birth is necessary because of the possibility of introducing infection into the open wound along the back. A vaginal birth could be very dangerous with such a wound. And yes, surgery is warranted. The opening is prone to infection and very dangerous as the spinal column is exposed. Also, most SB babies have hydrocephalus - fluid retention in the brain that causes enlarged heads and often brain damage. A shunt is almost always placed in the baby's head to drain the excess fluid. The surgery I mentioned is still in the early stages which is why it is restricted to specific cases, but if the results continue to show such promise it could become a more standardized procedure.

Fortunately, I believe it is 97% of babies that are born with no problems, so while it is taking a risk, it is not that high a risk.

I, too, was not aware that CF was detectable by AFP, I assumed the original poster knew something I didn't.

[LaLa]

My doctor's told me about the CF testing yesterday. It is a new test. I don't believe it's covered by insurance yet and it costs about $200 here in IA.

:)

[Els' 3 Ones]

I had none of the tests with any of my 3 . And my first was born when I was 35....................

My 3rd child, Duncan, has down syndrome.

I cannot begin to tell you how grateful I am that I did not know, that I did not have to spend my pregnancy worried and grieving. He was born at home and had good apgars (8 & 9) ----- my midwives thought they "saw" a little something but said nothing at that time because he was robust and nursing great. We had 1 week to bond with [u]Duncan[/] and not deal with down syndrome..............my heart aches for new parents who are told in the delivery room --------- they have to look and bond with the infant and the disability at the same time. That must be hard.

[BusyMommy]

That's fascinating that you can find out before labor that your baby needs a different kind of delivery. Certainly, I'd be all in favor of knowing that. I think I was a "freak" at my mw's clinic b/c I got the TripleScreen test done.

I read something just recently in a magazine (Parenting or BabyTalk?) about CF testing now being available.

[GB's Mom]

I will not have them done this time. Too much unnecessary stress! A dear friend of mine just received results of possible Downs, had the amino, and of course, everything is fine. But she stressed and cried for a week, was so worried which had to affect the baby. Plus the risk of the aminio! But she would not have terminated the pregnancy no matter what, so why subject yourself?

That's my opinion . . .

Tori

[Kermit]

Tori, that happened to a friend of mine, too. I guess the thing I'm hearing from my doctor is that they aren't likely to find anything that will make a difference at 16 weeks that can't be found at the 20 week ultrasound. If they find any spinal cord defect at the ultrasound, they will deliver me by Cesarean. I feel that anything that is too minor to be detected in the ultrasound is too minor to make a difference in the outcome, based on my doctor's explanation. She said that babies that have been born vaginally with small defects are immediately treated appropriately and have no problems from the birth. I suppose she could be wrong or that there is some case out there where a better outcome could have been possible. Things like that always happen to SOMEone, even when the doctors KNOW what they are dealing with! Amazing to me. As far as the surgery in utero goes, again, I think if they detected a defect in ultrasound, I could then decide on getting an amnio and possibly having that done. If the only way that surgery can be successfully done and even known to be needed is to have testing done at 16 weeks that is not completely accurate and have an amnio and risk miscarrying a perfect baby, I just can't make that choice. But I do respect the choice of those who can and want to make that choice.

[candiland]

I feel that the majority of routine prenatal lab work causes undue worry and stress on the mother (and the baby!) and can really interfere with the prenatal bonding experience.
The practice of obstetrics searches so hard for a problem that they usually find one! (Or think that they do) "Oh, your pelvis may be too small..." "Oh, your such-and-such levels are too high..." "Gee, your fluid volume looks low..." :rolleyes: )
My personal stance on this issue is, life is what it is. Go with the flow. People are sooo obsessed with controlling what happens in every aspect of their lives... and it has carried over into the way we have babies. If my child is born and has Down's, he will still be the most beautiful child in the world to me. If my child has spina bifida, well, there will be some rough roads ahead, but what is really tough helps us grow stronger and more compassionate as individuals. Geez, soon they'll be able to test for eye and hair color! :rolleyes: Then if you don't like it, maybe you can abort and try again, or have it designed in a lab for you!:rolleyes: I know, I am exaggerating, but I'm doing so to make my point... you can take what life gives you, go with the flow, and trust in the Universe, nature, God, whatever you happen to believe in, or you can obssess, worry, and try to control things and do things the way YOU want them to happen... and push aside many valuable lessons in the process.

[Viola]

I didn't know that, El. So did he have any problems nursing after that, or did he continue to do well at it? I've read that it can be more difficult to nurse a child with Down's, so I'm interested in the experiences of those who have done it.

[KeysMama]

I chose not to have the tests - I do not believe in the "well then we will be armed with knowledge and can prepare" stance.

I do not believe in finding out the sex either.

My reasons for both are the same:

In utero, in the warm watery mysterious womb, this will be the ONLY time your child will experience absolute unconditional LOVE

If you know the sex, you embrace the child as male or female. If you know there is a problem you embrace the child as a female with downs, etc.

Especially if you do not plan to sign up for in-utero surgery, abortion , I say love your baby unconditionally for a few more months

[Piglet68]

I'm curious about this "anti testing" stance. A recent study indicatd that the reason the US may have a higher infant mortality rate than other developed countries, even though they have the most advanced NICU care of all of them, is due to the lack of prenatal care. In other words, countries like Canada and Australia provide coverage for pregnant women, whereas many in the US don't have the insurance to get prenatal care.

This is one example of how getting prenatal care greatly decreases both infant and maternal mortality, and increases the health and well being of both mother and child.

Perhaps we should not bother getting our blood pressure measured, or our fundal height checked, because it may just worry us unnecessarily? I find it hard to understand this sweeping negativity towards testing when it seems that good prenatal care has truly advanced the health and welfare of mothers and babies. In the old days when there were ONLY midwives, and I'm sure there was much more knowledge in that department which we have since lost, death during childbirth was a major cause of mortality in women. Pregnancy doesn't always go smoothly.

I just really don't understand this attitude....though I'm trying! Thoughtful replies are much appreciated...

[Due_in_August]

Well, I'm from Canada and I get all my prenatal checkups free, so far this is the tests/treatments I've been offered.

I've had two U/S (one to get an semi-accurate due date and the "normal" 18 week one) and during my last visit with the doctor that will deliver my baby I was told, "there is no need to schedule another u/s because there should be a REASON behind you getting one. There simply is no problems and no reason to put you through that as everything looks fine". So...I guess that means that even my doctor isn't too fussy on putting a pregnant lady through unnecessary u/s...imagine that. To me, it didn't matter either way, I won't go into it because my opinions weren't respected in another thread so I won't bother. But I only wanted u/s if they were "needed" to be done, and after he said I didn't "need" one he asked me if I "wanted" one and I said simply "no, that is perfectly fine".

I had the gestational diabetes testing during week 28, which came back normal. I took it because women get gestational diabetes only during pregnancy so having it in your family doesn't put you at risk, being pregnant...puts you at risk for it. The drink did make me sick to my tummy (blech) but other than that I'm doubtful it hurt anymore than my one a day soda, or a now and again sweet fling. I didn't find that test to be too intrusive, but bare it mind, I did have a favorable outcome.

I plan to get the Group B swab as well, just because if I have it I'd like to know that my babe would be protected against it. I had the hiv testing and other STD testing done in the first visit to rule out all those types of things, for the same reason as above.

I declined the triple screen however, mainly because, knowing if my baby has it or don't have it, or could possibly have it or whatever that test does really prove (which from what I heard is barely anything but false positives) it will not make me love him/her any less. It wouldn't make me want to abort, or to give her up or anything else. So why freaking bother? This is only my opinion...but to ME, I think it isn't that important I know beforehand. Next thing there will be a test to find out if in 20 years the baby will get cancer...should I take that so I can worry 20 years down the road? What would the test honestly prove? That the baby has it...well, thats fine, but it won't STOP it from happening. Anyone who wants to know so they can prepare, rock on...but for me I'd just spend the rest of my pregnancy worrying and that certainly, wouldn't make the situation any better.

I'm not a completely natural person...I'm not going with a homebirth because there are no midwives around here, or doulas or anything else. So I will have a hospital birth (yay). I don't WANT medication, but I will be happy to know it is available to me if I "need" it. I plan to breastfeed, but not to cloth diapering. I did buy a crib, though the babe will room-in with me during the first 4-6 months at least. I am using regular bottles, not the kind with desposable liners once I do go to bottle feedings. I plan to pump though, and not use formula right away. I am trying to have, what to me feels, like a good balance between natural and "21st century" birthing/rearing.

I'm fine with going natural, I actually would like to have tried a homebirth, but knowing what COULD go wrong, I wouldn't feel good with going it alone (and that would be my only resort around here). I don't know quite how the hospital birth will turn out, but I am a very VERY outspoken person and few people can get "over" me. Nurses and doctors in their cute little uniforms are NOT my superiors and I don't let them boss me around so my only hope is that it goes as well as I think it should. If not, knowing my personality, I'd probably get up and go have the kid in the parking lot if they were really giving me the go around. :D

Anyways, I'm sorry this got so long-winded...just wanted to toss in what I thought about stuff...I'm all for natural...but I won't be having my kid in the bush anytime soon...so a few things, I guess I will have to be content enough in...just as long, as they do it MY way. :love

[Kermit]

Piglet, I understand your question. I cannot address why some may be anti-testing in general as I am not. However, I wonder what your response is to those of us who have good reasons for refusing this test. I stated that my reasons were that there is not sufficient evidence that treatment for what they find from this test and an amnio could not be found and treated at the 20 week ultrasound or that the risks of miscarriage of a perfect baby and undue stress are enough to outweigh any fractionary chance of a significantly better outcome with early testing vs. 20 week imaging. I find it interesting that my medically minded OB finds the testing unecessary and unhelpful, given my stance on abortion/risking miscarriage and low risk factors, considering all the other unecessary precautions they seem to take. My last OB felt the same and I highly respect both women as they seem pretty educated on the latest studies. They do not indicate to me that this testing greatly decreases infant and mother mortality rates or that it greatly increases the health and well being of child and mother. Now, if you can show me how my doctor is significantly wrong, I'm more than open to knowing how, but I need specific study that refutes the reasoning above as misinformed.
Also, in the case of GD testing, I clearly can understand why some opt to refuse it. Did you read the studies posted that show why the studies are flawed and the outcome of treatment possibly more harmful than good? Until they were posted on the other thread, I was not aware of these studies. After reading them, I do believe there are those who are already borderline diabetic and that in their case, pregnancy could tip them over into being truly diabetic, and that this kind of diabetes could be harmful to a fetus, but only those at risk need to be routinely screened. I don't see a low risk mother refusing GD testing as refusing something that will greatly increase the mortality, health and well being of a child and could in fact harm it. Outcomes for treated vs. untreated mothers/infants is similar and yet C-cection rates are higher for those considered to have GD.
My point is that I think most people who are anti this test or that have very educated and intelligent reasons for their decisions. If they are misguided or misinformed, I'm sure they are open to more information, I know I am. You have made some general reference to some things and I've brought them up to my physician and have come to a different conclusion than you have, so either she is misinformed or has a poor interpretation of the situation, or you are/do. If she is, please show me specifically how. I'm open, really! That's a lot of why I come here is to seek specific information I may not be aware of. Information that may not be yet mainstream, but has a real solid basis in fact and study. But I cannot go on someone else's interpretation alone, I need to see studies and figures for myself, ya know? For instance, when I tell someone that breast milk is better for their baby than formula, even though I think it's common knowledge, I just don't tell them that, I give them links to studies and specific statements made by respected institutions, etc.
Anyway, I know there are some out there that become very suspicious and reactionary of all medical intervention and don't always have good reasons for every thing they are anti this or that about, but on this topic and GD, I think most of us have good enough reasons that I'd think you would understand our choice as reasonable?

[crazy_eights]

Piglet - The AFP test has a 98% false positive rate. That means only 2% of the people that screen positive for a problem have one. It also has a significant false neg. rate, though I don't remember the numbers off the top of my head. So 98% of the women who test positive on the screen are left with the option of amnio - which I am sure you know is not a benign procedure - or doing nothing, but worry until term. Miscarriage and rupture of membranes are two of the risks of the procedure. So for a baby that a woman is not going to abort if anything is found anyway, why what is the point? And as for the neural tube defects - as mentioned, they can be picked up by u/s. And truth be told, if hydrocephaly exists, a good practitioner can usually assess this near term by palpation, and would refer for an u/s if the 20 week had been refused.

Just by way of annecdote, we recently had a pregnant MD who had no risk factors, but wanted an amnio "just to make sure that everything was OK", and in the process ruptured membranes. So this woman has ruptured membraned from 20 weeks - which statistically has a very poor outcome. But her amnio indicated all was well with the baby.

I understand that there are those who would choose elective abortion if they found a problem and for them the test makes sense. However, an educated refusal is by no means the horror you seem to think it is.

BTW - most of the difference in perinatal mortality in the US vs. other countries have been linked more to self-care behaviors (including avoidance of teenage pregnancy. STD's and drugs) and lifestyle than to prenatal care. There is a very interesting book written on this topic, by a perinatologist, Dr. Thomas Strong, though I am blocking the title at the moment! I think it is "The Myth of Prenatal Care in America".

[KeysMama]

Originally posted by Mom2five
BTW - most of the difference in perinatal mortality in the US vs. other countries have been linked more to self-care behaviors (including avoidance of teenage pregnancy. STD's and drugs) and lifestyle than to prenatal care. There is a very interesting book written on this topic, by a perinatologist, Dr. Thomas Strong, though I am blocking the title at the moment! I think it is "The Myth of Prenatal Care in America".

Absolutely! The mortality and morbidity rates in the US have little to nothing to do with our prenatal care and everything to do with our unhealthy culture birthing practices, and feeding practices of the newborn.

The protocols for testing and maternal-fetal management are more often than not, a reaction to public health concerns ( eye ointment, etc)
I recommend The American Way of Birth by Jessica Mitford, Women's Bodies Women's Wisdom by Dr. Christiane Northrop and Immaculate Deception by Suzanne Arms.

Bottom line is, it is available. If you want that is your choice.
Immaculate Deception by Suzanne Arms.

[candiland]

Yes, "Immaculate Deception" explains why the USA ranks 24th in infant morbidity/mortality, while the Netherlands ranks first... it has VERY little to do with prenatal care and testing. In the Netherlands, the majority of women birth at home, and the small percentage that birth in hospitals use midwives, not ob's. The midwives do not offer or push for such advanced testing. If you want an ob. to attend your normal, uncomplicated birth, you need to pay for it yourself! :eek It is well understood that all the testing and surgery that an ob. does is wonderful for the 5% that need it, but potentially dangerous for those that do not. The Netherlands even has limits as to how many obstetricians are allowed to practice in one particular area! So our horrible infant mortality/moribidity rates have been linked to our horrible birthing culture -- most women give birth with drugs, and 25% of those women end up with cesareans. Interestingly, the LARGEST PERCENTAGE OF CESAREANS happen to middle- to upper-class white women with private insurance!!!! NOT to drug mothers, mothers without prenatal care, etc...
So it's one thing to use hands-off diagnostic procedures in a normal, uncomplicated pregnancy... but using very invasive and potentially dangerous medical procedures that don't even work that well is just silly to me.

[kama'aina mama]

You raise an interesting question Piglet68, but I tend to look at it from the flip side. A lot of these tests just don't bring much useful information to the table and I don't want to be bothered with the whole thing. Rather than trying to justify why I don't want certain tests I put the burden on the medical establishment to convince me I should have the test... is it safe? does it provide me with information I want or need? If they can't satisfy me on those counts I'm not interested.

On a larger scale, I have strong feelings about the whole issue of viewing pregnancy as a series of pathologies. The fact is that in a vast majority of pregnancies there is really no legitimate role for a doctor, so they have created one. People feel ripped off if they go to the doc and all he does is check BP, listen to heart rates and ask how you're doing, if you're eating well, etc. So, they churn the pot (IMNHO) with very impressive, highly medical procedures and tests. They do them because they can and I often wonder how much thought they give to whether they should or not.

[Piglet68]

Thank you for your replies, ladies. I do understand the reasons for declining an AFP test since there really isn't a defineable treatment and some of you made good points about how it might not interfere with the post-birth bonding to find out suddenly there was a problem. I guess until we are in that situation we can't really know how we would react. I do wonder about the risk of vaginal birth in spina bifida cases, but it wouldn't be the first time an indication for cesarian turned out to be less than absolute, lol.

It was the gestational diabetes one really shocked me because it's just a sugar drink and the treatment is just a healthy diet so I didnt' see why it was such a big deal to take this test. I know that imbalances in sugar/insulin can be very dangerous - I was not aware that treated vs untreated GD has similar outcomes. Frankly, that genuinely suprirses me. Anyways, that is when I began to wonder where the line was being drawn and prompted me to ask my question.

Due_in_August. I really enjoyed your post! I only received one doctor-ordered U/S during my pregnancy, at 20 weeks to make sure everything looked good and we asked to know the sex. I actually had a number of U/S performed on me before then since I was working with a sonogram machine and could easily hop up on the lab bench and take a look, lol. It is really cool b/c we have great videos of her at four different stages and it is so neat to see how she grew.

I did want to address the response to my statement that the US had such high infant mortality rates: I am aware that when compared to a place such as the netherlands, the way we go about birthing and caring for our babies here in North America is almost certainly a factor. However, the specific study I was referring to compared the US to Canada and Australia. The death rate was DOUBLE that of Canada and yet both countries share the same (poor?) attitudes towards birthing. The only difference was that the US had high numbers of women who got no prenatal care due to lack of insurance. I also believe that rates of teen pregnancies and STDs are also very similar between Canada and the US. The only real difference is that everyone gets health care in Canada, so it made sense to me that in this study, the prenatal care factor was the most relative one.

I want to thank you for your thoughtful replies and steady tone. I honestly am quite new to this attitude of "anti prenatal testing" and hope I didn't offend anybody or come across as judgemental. We all have the right to dictate what is done to our bodies. I just wanted to try to understand the rationale behind some of the strong "anti medical" sentiments I seemed to be picking up. I'm here to learn! Thanks agaiin ladies!

[mamamoo]

Just have one point to make about the GD testing. Maybe the drink is somewhat harmless(who really knows?), but a diagnosis of GD is NOT just a change in diet. This would put the woman into the "high risk" category. Maybe losing the chance to have a midwife(I almost lost that chance based on my weight alone, with no history of problems in previous pregnancies), homebirth, and intervention-free childbirth experience. Also as stated earlier there is a higher rate of c-sections in GD moms(maybe because of the high-risk status, and OB care?).
Just something to think about.

[milesmom]

How often can surgery be performed in-utero and even if it can does anyone think about what that entails for the infant? I just can't see the positive side of us trying to control, control, control this whole process. How can you "prepare" a person for something they have never experienced. To me if you tell someone their baby is "messed up", they spend the rest of their pregnancy projecting what that experience will be and feel like. That is not how life works. While a woman is pregnant she and the baby deserve to be in the moment and not speculating and living tentatively. I know so many women who just live from test to test- always feeling restraint in connecting with the baby until they know it's "perfect".

The bigger issue- we all take so much of this for granted. You can have every test and still have an unforseen outcome. I just heard about someone that happened to. Perfect ultrasounds, amnmio and at 32 weeks they realized baby had stopped growing and had to be c-sectioned with brain damge and all kinds of problems. Then, there are birth traumas and post-natal problems and then, oh yeah, life...don't we live with the reality that our loved ones (children included) are prone to an overwhelming variety of physical complications throughout their lives, many of them fatal. You can't buy peace of mind, it's either something you work on creating for yourself or not. The medical industry makes a lot of money trying to sell it, but life still happens.

[AMum]

Mamamoo ~ I think it depends on the mindset of your provider. I tested + for gd with my last pg. My CNM did not see me as high risk, we managed my diet and closly monitored my glucose levels & weight gain. I had a succesful homebirth. My BIL, an OB/GYN did feel I should be labeled high risk, but he was wrong. I think it should depend on the patient and the patients dedication to managing her own condition.

I think the AFP/triple screen is a waist of time. It has a 95% false positive rate!!! What possible good could come out of taking a test like that! You are not forearmed, you really have no more information than you did before you tested. It just gives you more cause to worry. Then if you choose the amnio you have the risk of miscarriage, no thanks!

I don't think that refusing this particular test is in any way related to the rest of prenatal care. If you test positive for GD you ARE positive and you can take steps to control the situation. The same goes for high bp and other conditions during pg. These tests give reliable results.

Ashlea

[LaLa]

This is an interesting discussion. I appreciate hearing the different ideas and viewpoints!

I just wanted to address one idea, and that was a mention of being anti testing.
I can't speak for everyone, but I am not anti testing.
I'll tell you what I am, though...
I am a mama who wants to be informed and do what is best for my body and my baby. That is not always the same route that the "norm" may follow. it may lead to more questions and decisions that certain medical procedures may be unecesary for me and my family.

I can only assume that many of the mamas feel the same way.
One thing I have seen repeatedly with our fellow Mothering Mamas is that we love to be informed!!! AND that we parent with our hearts, minds, and bodies...even if that means stepping away from the "norm".
:D
:thumb

[Kermit]

Amum, "If you test positive for GD, you are positive. ...these tests give reliable results."
That's under debate, and that's why women are refusing it. Some studies show that what they consider not normal(positive), is overly cautious. The levels they use to diagnose GD are not as high as those used to diagnose type Ior type II. They are lower because they are cautioning that it is approaching risk. Acutal risk is arguable. The outcome of treated women's babies is similar to the outcome of untreated babies.
Of course, there is some serious risk to a baby who's mom was already type I or borderline type II diabetic. Those at risk or who have symptoms that make one suspect diabetes, should be caught and tested early.
I think it would be nice if they did a lot more study on this and changed what constitutes a positive result. Also, if their testing was more accurate the FIRST time, and the results were more indicitave of an absolute problem, I would have it done without question.

[lilyka]

I won't be having them done. I don't care if my child doesn't fit a medical definition of perfect. What ever needs to be done to help my child will be done in due time if nessecary. I worry about everything when I am pregnant whgy add more to it. I would rather find out when the possiblity of doing something is real and doable. (ex: lets schedule the surgery, lets start therapy).

Secondly those tests can be risky. With amnio the risks of loosing your baby are high and signifigant. I am sorry but nothing is that worth knowing. I would never jepordize my childs life so that i could panic the next seven moths about what might be.

Third, they are highly inaccurate. My cousin was told her baby would have gross abnormalities and was harrassed untill she delived to abort. It was the kind thing to do. her child would live a horrible life filled with pain and misery, it would wreck her marraige and end any hope of freedom she had in the future,. Any loving parent would abort now rather than selfishly continuing in the pregnancy. Well, missy is fine and by far the brightest of the 4 kids in the family. She doesn't have a single health problem and everyone is quite glad she is around. Why subject yourself to that kind of stress, judgement and pressure. You have enough to fight for.

[Irishmommy]

Originally posted by Piglet68
I believe if the child has spina bifida a cesarian birth is necessary because of the possibility of introducing infection into the open wound along the back. A vaginal birth could be very dangerous with such a wound. And yes, surgery is warranted. The opening is prone to infection and very dangerous as the spinal column is exposed. Also, most SB babies have hydrocephalus - fluid retention in the brain that causes enlarged heads and often brain damage. A shunt is almost always placed in the baby's head to drain the excess fluid.

Piglet68, my sister has spina bifida, but I'm 99% certain she was vaginally birthed (they did know beforehand she had it). They got her straight to the children's hospital and closed her spine there. I don't ever remember her having a shunt, though she was on meds to prevent/stop the hydrocephalus. Having said all that, I should mention that she is adopted (from birth), so I may be wrong, but I was 17 at the time, and my parents would have talked about it.

She has a large scar on her back, but otherwise is healthy, intelligent, perfectly mobile. You couldn't tell there ever was anything wrong.

[zippitydo-Ma]

I did not have them done. The AFP has such a high false positive - AND false negative - I didn't see much use exept in causing needless worry or a false sense of security... [Women feel so relieved when they come back negative - they really should be informed that that carries no more weight than when it comes back positive. OK - well, not enough weight for me.] That's why they can only call it a 'screen...'

You get accurate info from an amnio, but we opted to get neither of these done. It's really a personal decision for everyone...

:hippie

[ramlita]

I wouldn't quite say they're terrible, and I'll bet that there are few people who would characterize themselves as "anti-testing," but NO THANKS.

I love the way someone put it: let the baby be loved unconditionally ! A worried mom produces all sorts of stressful chemicals, which are no use for the baby, whether healthy or special-needs. There's a great book about how maternal stress and daily habits can affect the developing baby: The Secret Life of the Unborn Child, by Thomas Verny, MD, and John Kelly Imagine that mom smoking cigarettes during pregnancy can have emotional repercussions for the baby! There are also some good points about how troubling dreams during pregnancy can make for an easier labor, since mom is working on her hopes and fears on such a primal level. Also some fascinating discussion of how birth events/traumas can affect a person up through adulthood... I could go on and on. Great book.

But the book that made me reply to this thread is The Tentative Pregnancy: Prenatal Diagnosis and the Future of Motherhood, by Barbara Katz Rothman This is a very thorough account of what is being discussed here, complete with the statistics of the risks and benefits of testing, and the whole spectrum of implications relating to it. The book is full of excerpts of interviews with parents who made all sorts of different decisions, with all sorts of outcomes. There is so much to learn from this book!
I didn't realize that amniocentesis is best done at 20 weeks- well after most of us feel our babies kicking! I can't imagine being that far along, and hearing that there may be something "wrong" with the baby. This book, I think, could be a great tool for anyone facing these decisions. Unfortunately, my copy is dated 1986- I hope she's updated it, or will soon!
She also wrote In Labor: Women and Power in the Birthplace. She's so great- always very informative and thought provoking.

[Pallas]

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Originally posted by Piglet68
I believe if the child has spina bifida a cesarian birth is necessary because of the possibility of introducing infection into the open wound along the back. A vaginal birth could be very dangerous with such a wound. And yes, surgery is warranted. The opening is prone to infection and very dangerous as the spinal column is exposed. Also, most SB babies have hydrocephalus - fluid retention in the brain that causes enlarged heads and often brain damage. A shunt is almost always placed in the baby's head to drain the excess fluid.
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My sil has SB. Born vaginally. She's 26 now.

[RainCityMama]

candiland - I am in total agreement with your first post.

The more I read the more I become aware of how backwards the current state of birth is in our society.

Peace.

[Pynki]

I think the AFP test is an awful test that shouldn't even be offered.. THe inaccuracy of it should scare everyone away from it.. However.. I do think that if you have a family history of birth defect or genteic issues you should probably look into testing to make sure everything is ok even if you ARE NOT going to terminate you pg...

We don't have any issues like that in our family and i am still relatively young at 28, so we don't do any of the blood test just the U/S at 18-20 weeks...

Warm Squishies...

Dyan
:wink

[mirlee]

I had the tests. If they did show something was not normal, he was still our little guy and our responsibility. We would have done everything to help him. I also would have had them done again. Fortunately, all was well.

[compleatmomof4]

I had the AFP with my second child. Then I had a level 2 ultrasound (my belly got hot to the touch and it lasted 45 minutes but no one told me it might not be 100% safe). Then for nearly every prenatal visit thereafter I was questioned why I didn't get amniocentesis. In my experience each test was inconclusive so it lead to yet another test.

*I conceived my second roughly 14 weeks after the birth of my first so I had no idea when I conceived. I think my medwife was thrilled with the opportunities to practice on me.

*My daughter is healthy and did not have neural tube defects of any kind.

[Ragana]

Originally posted by Piglet68
I'm curious about this "anti testing" stance. A recent study indicatd that the reason the US may have a higher infant mortality rate than other developed countries, even though they have the most advanced NICU care of all of them, is due to the lack of prenatal care. In other words, countries like Canada and Australia provide coverage for pregnant women, whereas many in the US don't have the insurance to get prenatal care.

This is one example of how getting prenatal care greatly decreases both infant and maternal mortality, and increases the health and well being of both mother and child.

Perhaps we should not bother getting our blood pressure measured, or our fundal height checked, because it may just worry us unnecessarily? I find it hard to understand this sweeping negativity towards testing when it seems that good prenatal care has truly advanced the health and welfare of mothers and babies. In the old days when there were ONLY midwives, and I'm sure there was much more knowledge in that department which we have since lost, death during childbirth was a major cause of mortality in women. Pregnancy doesn't always go smoothly.

I just really don't understand this attitude....though I'm trying! Thoughtful replies are much appreciated...

Hi Piglet,
I really think there is a difference between these types of prenatal care, i.e. basic care that helps ensure the best outcome for the most people vs. specialized tests meant to catch very rare conditions.

I am very much in favor of prenatal care. I have one girl, age 3.5 - for that pregnancy, I saw an OB, had all the tests, had bloodwork done each time (I was anemic), had the AFP test (false-positive high result meant we had to have a long U/S to make sure everything was OK), fetal monitoring each visit plus a large portion of the time in the hospital. Ended up delivering in the hospital with the whole epidural/forceps experience. I felt very "medicalized". Don't get me wrong, if there is an indication that something is wrong, I believe in going to the doctor/hospital, but I felt that something routine was made into something non-routine. Also, basic issues like nutrition were not covered and in retrospect could have helped me with the one problem I did have - anemia that did not go away despite taking iron pills the whole time.

I am now 26 wks. with #2. Am seeing a midwife - had initial bloodwork to make sure I am not anemic, check of protein and sugar in urine each time, blood pressure, measure fundus, hear heartbeat, discuss all my concerns for an hour if I need to, talk a lot about nutrition. We're planning a home birth. I feel that all of the basics are being covered thoroughly, and if there were the slightest indication that something was wrong, I would be sent up to the next level of care (OB).

I guess I feel like the most time should be spent on "the basics" -i.e. things like nutrition, and the least on specific testing (unless there is a good reason for it, like heredity), but I feel that this situation is generally reversed.

[phathui5]

I'm not having the AFP test because of the high false positive rate. I don't want to be pressured into more testing because of this test. I also would never have an abortion and the risk of miscarriage after amnio isn't worth the info it would give me.

[SpiralWoman]

I didn't have any of the AFP screen done bcz it is only a *screen* not really a test. In my understanding, a test gives you results in qualitative (yes/no) or quantitative terms. A screen just rules certain things out based on percentages & statistics. I knew that the AFP wouldn't be definitive, so why bother. I did go ahead with an U/S around 20 wks to "rule out anomalies". For me, I just wanted to know if there was anything we could possibly do something about in utero. I would hate to have the baby & have some Dr say "well if we'd known @ 20 wks we could have yada yada yada." Of course, I weighed the risks & benefits & to me the risks of U/S are so much smaller than for amnio, I would never consider an early diagnostic amnio.

I really agree with the point someone made early on about not being a consumer of "standard care" routines. I really have an issue with medical types being "authorities." To me they are paid consultants that I get information from. Then it is up to me how to proceed. I think it's important to take the time to be fully informed of all my options and even pushy if the info isn't forthcoming. I can see that our medical system is used to assuming that many people are going to abdicate that responsibility. I would not consider myself anti-testing in general, however I do take very seriously my role as an informed consumer of medical care & I insist on being the decision maker regarding my care. I have even refused vaginal exams that the Dr couldn't justify!

About the point that has been discussed of loving the baby unconditionally in utero & diagnosis of disability/ sex. I have a friend who refused amnio (42 yrs old) & her baby has Down's Syndrome. She was so glad that she didn't find out until after she was born. She says it saved her alot of worry & with her baby in her arms she was able to love her just as she was, Down's Syndrome & all. Just her story, but it makes sense to me.

For us, we had the U/S, but didn't find out the sex. Some people are really supportive of that & some people are real puzzled by it. We just want to love the baby for who they are & we don't want to start alot of gender issues any earlier than they have to be. We registered for baby clothes today & it was so hard to find neutral stuff, but we did it! It does seem to me like the birth will be more special for not knowing. I mean, right now I have this little stranger inside me flipping around & kicking me. Who is this person? A little somebody who is going to unfold into my life for years to come. When I am having my "mama worries" as I call them I tell myself that this person is going to be exactly who they are supposed to be. I think that if we knew boy or girl we would already be imagining this person a certain way, even if we tried not to. That will all happen soon enough. Right now I will leave the baby it's mystery. Plus, I get the fun of struggling with boy & girl names!:love I will say that I wonder if I would "bond" more with the baby in utero if I knew the sex. I think it would all be in my mind. sorry got OT.

blessings, Maria

[geomom]

Piglet68,

Standard prenatal care, aka urine checks, blood pressure and initial bloodwork, catch the most common problems that can be treated. Not having those done increases morbidity and mortality. The US doesn't have higher morbidity and mortality because of women refusing tests for untreatable during pregnancy problems, but because we don't offer the basic care that catches high blood pressure, IUGR, and pre-eclampsia which are more common and often treatable.

I refused AFP and only have an U/S if something comes up. First time I had bleeding which we checked out by U/S. This time I was measuring 5-6 weeks ahead so had U/S to check for any problems that might cause me to measure large. The reality to me is that a test cannot tell you if things will really turn out good or bad at birth. By all signs the first time, I should have had no problems. But it didn't turn out that way. Dd became stressed and suffered meconium aspiration in spite of being perfectly healthy otherwise.

[Viola]

The nurse in my OB's office asked me if I would want an amnio and a CF test, and I said no to both. I tried to find out what exactly the CF test does, but she wasn't sure and I forgot to ask the doctor. I wanted to find out if I was a carrier for CF before I started trying to conceive, so my husband and I had genetic testing done for the most common mutation. My husband was a carrier, and I was not. Had I been a carrier too, we probably would have decided not to risk the 1 in 4 chance, but my odds of conceiving a child with CF were lowered to 1:942 after the testing. I would not feel comfortable with conceiving a child, finding out that he/she had CF, and then aborting it. My husband's brother has CF and will be 40 this year. He has had a hard life medically, but I'm sure he's glad he's alive.

[Ilaria]

I think it's great that they are available if people want to take them. I did.
I don't know if we have terminated or not, but I do know that we wanted to have known (with further testing if necessary).

[casmi]

I had the triple screen done with all of my pregnancies except for this one. Honestly, I didn't think that I had an option so I just always had it done. This time around I became more informed and opted not to have anymore blood work done. I am having a high risk pregnancy due to PIH (pregnancy induced hypertension - high blood pressure) and I am being monitored by my regular OB and a high risk OB. I have had tons of blood work done to rule out any other causes for my high blood pressure.

Even though I am uncomfortable with alot of u/s - I have to have them due to the PIH I developed. I am confidant that the u/s would show Spina Bifida that can be corrected in utero. If my baby were to come out with down's - then so be it. I will love my baby no less and will deal with any and all problems that may arise from that after I have a chance to meet my baby.

I don't have a problem with the testing being done. I just chose, for my own peace of mind, not to have it done this time around.

[rubidoux]

I am in a similar situation to Cassie, since I have type I diabetes, I am seeing a perinatologist and am being nearly tested to death (often in the doctors office four times a week!). Interestingly, though, my doc did not even mention the AFP or triple screen or amnio. I was really amazed by that. I knew I didn't want one and was all set to stand my ground. lol But apparantly he's not so keen on them either. I was shocked because he's really not a granola crunchy kinda guy. He is very much what I think of as the typical specialist - into the whole medical model (unfortunately, I can already see that this is going to come through much more in the context of birthing).

The most invasive tests that I have had so far (and I'm at 35 weeks now) have been the ultrasounds, which I feel fairly comfortable with (though I've had several more than a non-high risk mom would, which I'm not so happy about). And other than the u/s's I've had no diagnostic tests for the baby.

And, btw, SpiralWoman, I really liked what you had to say about finding out the sex and I totally agree. We found out that we were having a boy at 13 weeks because I just couldn't help myself and in a way I think that may have helped with bonding (though, he's my first and I don't have anything to compare it to) but I HATE the idea that I'm genderizing him already. I try not to, but why else would I even be curious? Kwim?

Anyway, very interesting discussion.

J.

[Robinna]

I feel strongly that this is a very personal choice that can only be made by each person, for each pregnancy. We declined all testing except for one US at 20 wks to confirm due date and ensure the placenta was well out of the way, and we've done blood testing for my hemoglobin (I tend to be anaemic so this is a homebirth risk factor) and will be doing the group B strep so that we can waive the eyedrops with confidence (since I already know I haven't got gonn. or syph., no reason to put the baby through eye drops if there's also no strep B!). Our MW has no problem with this, although the eyedrops are actually a legal thing that we wouldn't be able to waive if we were giving birth in the hospital.

We didn't do any genetic screening at all. I asked about the benefit of surgical birth for a SB baby, and the MW essentially said that they're not really doing that yet - at least not here. So for us, there's no point. Since the tests are not conclusive, and we would never abort (because I don't think I could live with myself) (don't take that the wrong way, I DO NOT judge people who choose abortion for WHATEVER reason, it's just not for me), there was no point. We'll love our baby no matter what; if s/he has a health problem, we'll look after our child the same way that we'd look after each other if one of us developed an illness. I don't think you CAN really prepare for something like that - at least I couldn't. I can just cope with whatever reality I'm presented with.

How very philosophical for a Friday morning....

:) Robin