Prenatal Downs Syndrome Testing: Have you or would you have it done?

[The_Smiter]

There can be no justification for amnio testing for any reason - especially if it is to simply mollify fears of parents or to help them “prepare” for the worst.

Prayer is the best way to prepare for a baby’s arrival - no matter what the condition of the baby is. Blood tests, ultrasound, and other testing that is non-invasive should be completely exhausted in a search to help understand a baby’s health condition in utero. However, the womb is the baby’s home during gestation. Puncturing the home to give certain knowledge to the parents, especially when it involvesunacceptable risk (1 in 250 or so chance of spontaneous miscarriage) is simply selfishness. Trust in God. Use the medical advances at our disposal to aid the baby in getting to its birth. Fear and anticipation are some of the things that motivate us as parents to make sure that we have healthy pregnancies - eat right, exercise, get plenty of rest. Really - do mothers ever take s good care of themselves as when they are pregnant? Do husbands ever give their wives the attention that they do throughout their marriage than when their wives are pregnant? We should, of course do that, but when we know a baby is coming, we take wxtra special care to make sure that it is OK.

I believe that we can invade the womb when our medical knowledge tells us that there is a congenital defect that can be surgically repaired, that would make it impossible for the baby to come to full term. The baby is a human being and it deserves all of the medical care and attention that it can get in order to remain viable and healthy. But even with the knowledge that a baby has Down’s Syndrome - how does knowing that justify the risk involved in conducting an amnio test?

These are very difficult choices that many people have to make in this modern age of advanced medical testing and technological advancement. Children, however, do not belong to us to do with as we please. They belong to God and are a gift to us for a time. We should always act in the best interest of the child. Parents not knowing if a child has Down’s Syndrome or not is not a risk to the baby in utero. Amnio testing is.

 

[Oscarthecat]

I’m just looking for some clarity on what’s being discussed here, because it seems like this thread has developed quite a bit from the OP’s original statement, maybe the original poll might not have addressed the issues involved:

Maybe a new poll might help to give a better view of what people think?

How about these classifications:
(the last two may offend some people. It offends me, and I’m the one who wrote them. Still, I think it can be good to know the full spectrum of what people think).
A. The test is wrong in all cases because there is no treatment for the condition it is designed to detect, and it cannot it increases the chances that a child may be aborted.

B. The test is wrong because it may cause significant harm or death to a percentage of children tested.

C. The test is wrong for the reasons listed in both options A and B

D. The test itself is morally neutral and should be available at the discretion of parents, with the approval of their physician.

E. The test can be a positive thing because it gives parents the opportunity to prepare for children who have special needs.

F. The test is a moral good because I think it is better to abort children with disabilities.

G. This test should be mandatory. The law should require parents to abort children with this condition, or at least should require that parents who refuse to abort be penalized somehow.

Personally, I agree with option “D.”

Parents have to weigh the benefits and risks of thousands of decisions over the course of raising their children. I think that so long as parents have the best interests of their child in mind (BTW, this does not include aborting their child, as some might think) and have their physician’s approval, then we, as a society, must respect their decision.

Just for the record, my wife and I chose not to have this test done because we didn’t feel the need to know was worth the risk.

 

[Nechasin]

We had the non-invasive test done with our last child. I was against it and don’t think that it should exist because a positive test encourages people to abort. My wife wanted it because she wanted to be able to have the oppurtunity to mentally prepare herself if there was a greater than normal chance of an issue. For her mental well-being we did the test.

 

[seekerz]

There can be no justification for amnio testing for any reason - especially if it is to simply mollify fears of parents or to help them “prepare” for the worst.

In actual fact, amniocentesis may also (less commonly) be used to help manage conditions/disease which complicate pregnancy; it is not simply a means of detecting genetic disorders. So yes, there are reasons when for the sake of the fetus, the risk of an amnio might be justified.

This exemplifies one problem I have with pro-life issues: the tendency to see scientific issues through a single prism and to be suspicious/distrustful of some perfectly legitimate medical interventions.

 

[Oscarthecat]

There can be no justification for amnio testing for any reason - especially if it is to simply mollify fears of parents or to help them “prepare” for the worst.

Prayer is the best way to prepare for a baby’s arrival - no matter what the condition of the baby is. Blood tests, ultrasound, and other testing that is non-invasive should be completely exhausted in a search to help understand a baby’s health condition in utero. However, the womb is the baby’s home during gestation. Puncturing the home to give certain knowledge to the parents, especially when it involvesunacceptable risk (1 in 250 or so chance of spontaneous miscarriage) is simply selfishness. Trust in God. Use the medical advances at our disposal to aid the baby in getting to its birth. Fear and anticipation are some of the things that motivate us as parents to make sure that we have healthy pregnancies - eat right, exercise, get plenty of rest. Really - do mothers ever take s good care of themselves as when they are pregnant? Do husbands ever give their wives the attention that they do throughout their marriage than when their wives are pregnant? We should, of course do that, but when we know a baby is coming, we take wxtra special care to make sure that it is OK.

I believe that we can invade the womb when our medical knowledge tells us that there is a congenital defect that can be surgically repaired, that would make it impossible for the baby to come to full term. The baby is a human being and it deserves all of the medical care and attention that it can get in order to remain viable and healthy. But even with the knowledge that a baby has Down’s Syndrome - how does knowing that justify the risk involved in conducting an amnio test?

These are very difficult choices that many people have to make in this modern age of advanced medical testing and technological advancement. Children, however, do not belong to us to do with as we please. They belong to God and are a gift to us for a time. We should always act in the best interest of the child. Parents not knowing if a child has Down’s Syndrome or not is not a risk to the baby in utero. Amnio testing is.

Your comment reminded me about interesting thing our OB said-

One of his patients came to him and told him she wanted to abort her child. He is very pro-life, and talked to her at length about her reasons. I should mention that the doctor referred to the woman’s position on abortion at that time as “invincible ignorance.”

Basically, her decision came down to her fear that her child might have Down’s Syndrome because there was a history of it on both sides of the baby’s family.

Our doctor said he struggled with this because he could not participate in any test that he thought might encourage an abortion.

In this case, however, refusing the test assured that the baby would be aborted.

But if he did the test, and it came back negative, the baby would not be aborted.

He decided to do the test because, in this case, it was the only chance that the baby would not be aborted.

Would anyone here have refused her the test, knowing the baby would be aborted?

 

[Miriam1947]

When my daughter, aged 39, was pregnant blood work showed some possibility of downs.

She went for a sonogram and the people there tried to push her and her husband into having amniocentesis as well. The said they would have a definitive answer in a couple of weeks and they could then decide what they wanted to do.

My question to my daughter and son-in-law was
“If the baby has downs are you going to abort?”

They said of course not.

Then the only answer for them was not to have amniocentesis because it does carry risks.

The people at the clinic were not happy at all with their No. Amniocentesis is a money maker.

By the way he was fine and is a four year old darling.

 

[wabrams]

I would possibly have it down if there was a risk in the family, but this test would be for me to prepare mentally and financially for a child with a disability that will more than normal care.

 

[EasterJoy]

There are tests that use ultrasound and blood work to look for Down’s. articles.latimes.com/2005/nov/10/science/sci-down10

We had an ultrasound test for Down’s, not because we had any intention of aborting, but because we wanted to make preparations, if the baby was to be born with that condition. We opted not to have amniocentesis, however, since the risk of the procedure was too high to be justified for purely informational purposes. That was our take on it.

(The ultrasound didn’t show Down’s. It did show twins…which also took a bit of preparation! )

 

[katy]

The problem I have with it is that many children die as a result of the procedure itself.

 

[Red_Meg]

I think there is a little lack of clarity on this thread.

We need to be very clear-- there are invasive tests, amniocentesis and chorionic villus sampling, which provide nearly-definitive (98%-99%) diagnosis of certain problems like Downs, anencephaly, etc. These invasive tests carry a small but definite risk of miscarriage which would otherwise not have occurred. They are also referred to as “diagnostic” rather than “screening” tests because the accuracy is so much higher that the tests described below.

There are also non-invasive tests, typically blood tests, that measure various quantities of significant markers. These tests can only provide a likelikhood, generally in the 60-80% accurate range, of the baby having a particular condition. The tests carry no risk of miscarriage, but can provide both false positive and false negative results. Depending on when testing is initiated in pregnancy, the blood tests may be coupled with an early ultrasound to examine the baby’s nuchal fold, which can also provide information about the baby’s Downs’ status.

I only know all this because I have the brochure from my OB sitting at my computer. I just want everybody to be commenting on this in an informed manner-- most people, including myself, draw a pretty sharp distinctin between the tests that carry a risk of miscarriage and those that do not.

Margaret

 

[Corki]

Unless something has changed in the last decade, the accuracy of the blood test lessens with the age of the mother. I was over 35 with both pregnancies and the doctor didn’t want me to even have the blood test since there is such a high false positive after age 35 that it would be upsetting and for some people cause them to make a fatal decision for their baby. So telling people to rely on the “non invasive” may actually be killing more healthy babies than the amnio causing killing of Down’s babies.

Down’s syndrome does create much adjustment need for the parents, emotionally and financially as has been said. But Down’s babies are often born with moderate to severe medical conditions that also need proper neonatal care. Early diagnosis makes it more likely that proper care is available for the baby and that the mother delivers in a hospital with the proper neonatal care available.

 

[seekerz]

I think there is a little lack of clarity on this thread.

We need to be very clear-- there are invasive tests, amniocentesis and chorionic villus sampling, which provide nearly-definitive (98%-99%) diagnosis of certain problems like Downs, anencephaly, etc. These invasive tests carry a small but definite risk of miscarriage which would otherwise not have occurred. They are also referred to as “diagnostic” rather than “screening” tests because the accuracy is so much higher that the tests described below.

There are also non-invasive tests, typically blood tests, that measure various quantities of significant markers. These tests can only provide a likelikhood, generally in the 60-80% accurate range, of the baby having a particular condition. The tests carry no risk of miscarriage, but can provide both false positive and false negative results. Depending on when testing is initiated in pregnancy, the blood tests may be coupled with an early ultrasound to examine the baby’s nuchal fold, which can also provide information about the baby’s Downs’ status.

I only know all this because I have the brochure from my OB sitting at my computer. I just want everybody to be commenting on this in an informed manner-- most people, including myself, draw a pretty sharp distinctin between the tests that carry a risk of miscarriage and those that do not.

Margaret

Thanks for clarifying that again. Many people of faith come here looking for moral guidance so in our discussions on medical issues in particular, we need to do the research and offer a factual basis for the opinions we express.

 

[The_Smiter]

In actual fact, amniocentesis may also (less commonly) be used to help manage conditions/disease which complicate pregnancy; it is not simply a means of detecting genetic disorders. So yes, there are reasons when for the sake of the fetus, the risk of an amnio might be justified.

This exemplifies one problem I have with pro-life issues: the tendency to see scientific issues through a single prism and to be suspicious/distrustful of some perfectly legitimate medical interventions.

Which conditions or diseases are you refering to?

 

[The_Smiter]

I’m just looking for some clarity on what’s being discussed here, because it seems like this thread has developed quite a bit from the OP’s original statement, maybe the original poll might not have addressed the issues involved:

Maybe a new poll might help to give a better view of what people think?

How about these classifications:
(the last two may offend some people. It offends me, and I’m the one who wrote them. Still, I think it can be good to know the full spectrum of what people think).
A. The test is wrong in all cases because there is no treatment for the condition it is designed to detect, and it cannot it increases the chances that a child may be aborted.

B. The test is wrong because it may cause significant harm or death to a percentage of children tested.

C. The test is wrong for the reasons listed in both options A and B

D. The test itself is morally neutral and should be available at the discretion of parents, with the approval of their physician.

E. The test can be a positive thing because it gives parents the opportunity to prepare for children who have special needs.

F. The test is a moral good because I think it is better to abort children with disabilities.

G. This test should be mandatory. The law should require parents to abort children with this condition, or at least should require that parents who refuse to abort be penalized somehow.

Personally, I agree with option “D.”

Parents have to weigh the benefits and risks of thousands of decisions over the course of raising their children. I think that so long as parents have the best interests of their child in mind (BTW, this does not include aborting their child, as some might think) and have their physician’s approval, then we, as a society, must respect their decision.

Just for the record, my wife and I chose not to have this test done because we didn’t feel the need to know was worth the risk.

I am not sure, but is there any situation or problem that is morally neutral when it effects a life and death decision?

 

[The_Smiter]

When my daughter, aged 39, was pregnant blood work showed some possibility of downs.

She went for a sonogram and the people there tried to push her and her husband into having amniocentesis as well. The said they would have a definitive answer in a couple of weeks and they could then decide what they wanted to do.

My question to my daughter and son-in-law was
“If the baby has downs are you going to abort?”

They said of course not.

Then the only answer for them was not to have amniocentesis because it does carry risks.

The people at the clinic were not happy at all with their No. Amniocentesis is a money maker.

By the way he was fine and is a four year old darling.

We had a very similar situation, and our daughter is due in another two months. The HMO was encouraging and amnio with a recommendation of abortion if it came back positive because of the costs and time involved in caring for a Down’s Syndrome child. Not to sound so cynical, but it sounded like it was cheaper for them to abort than provide medical care for a special needs child.

 

[Oscarthecat]

I am not sure, but is there any situation or problem that is morally neutral when it effects a life and death decision?

We make life and death decisions every day- it is an inescapable part of life. Crossing the street can be a life and death decision. The moral quality of life and death decisions becomes more certain as the probability of life or death increases.

Estimates regarding the risk of miscarriage caused by Amniocentesis range from as high as 1% to as low as .06%. (source: miscarriage.about.com/b/2008/09/24/amniocentesis-worth-the-risk-or-not.htm)

It is still a very high frequency, in my opinion, and is higher than I am comfortable with choosing for my own child. But it is not so high that the test is morally unacceptable in all cases. Which is why I think that the decision is best left to those people closest to the child.

 

[The_Smiter]

We make life and death decisions every day- it is an inescapable part of life. Crossing the street can be a life and death decision. The moral quality of life and death decisions becomes more certain as the probability of life or death increases.

Estimates regarding the risk of miscarriage caused by Amniocentesis range from as high as 1% to as low as .06%. (source: miscarriage.about.com/b/2008/09/24/amniocentesis-worth-the-risk-or-not.htm)

It is still a very high frequency, in my opinion, and is higher than I am comfortable with choosing for my own child. But it is not so high that the test is morally unacceptable in all cases. Which is why I think that the decision is best left to those people closest to the child.

True. I would not want to preclude amnio for cases that involve the detection of diseases or conditions that would be alleviated by medical intervention while the child is in utero (surgical repair, for instance, that is necessary in order for the child to come to term). However, most of the talk on this thread has revolved around the idea of comforting the minds of the parents who are told that there might be soft genetic markers for diseases that cannot be fixed before or after the child is born. Taking a test that has any chance of miscarriage when the reason is only to assuage our own fears or to “prepare” for the unexpected I believe crosses the line of not just prudence, but moral boundaries that are meant to protect life. I am not advocating a “zero intervention” type of policy. Rather, a standard that seeks to protect the baby’s life and safety above the simple desire “to know” on the part of the parents. I concede that there would be times where amnio would be justified, but not for most of the reasons that are being put forward in this thread. Perhaps expanding the poll as suggested by another poster, would be a better way to indicate what people are actually thinking on the subject.

 

[The_Smiter]

We make life and death decisions every day- it is an inescapable part of life. Crossing the street can be a life and death decision. The moral quality of life and death decisions becomes more certain as the probability of life or death increases.

Estimates regarding the risk of miscarriage caused by Amniocentesis range from as high as 1% to as low as .06%. (source: miscarriage.about.com/b/2008/09/24/amniocentesis-worth-the-risk-or-not.htm)

It is still a very high frequency, in my opinion, and is higher than I am comfortable with choosing for my own child. But it is not so high that the test is morally unacceptable in all cases. Which is why I think that the decision is best left to those people closest to the child.

But this type of decision is not being made on our behalf, but rather on behalf of an innoent who, if the chances of miscarriage could be communicated, might very well say, “Hey, I would rather you not poke around in my world just yet.” Is the child’s right to a safe and healthy pregnancy superceded by a parent’s desire to know with certainty the existence of a disease for which thay can certainly prepare, but for which they cannot cure or repair?

 

[seekerz]

Which conditions or diseases are you refering to?

Certain types of reactions between mother’s blood and baby’s is one example. Certain infections are another. Both can cause harm or even death to the baby and that had to be weighed against the risk of miscarriage with an amnio, if one is considered necessary.

 

[Stac4Grace]

I am 36 and expecting my 7th child. I have never had any of the extra testing done, just routine blood work and ultrasounds. I pray that my baby is as healthy as the others are but if he/she ends up being a downs baby I will still consider him/her to be a blessing. My prayers are with you all. God bless