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

[The_Smiter]

Those posters talking about trusting to God remind me of the story, usually told as a joke, about the man stuck on the roof of his house in a fast-rising flood. A boat, a helicopter and a plane each come past offering to take the man to safety, each time he says ‘no, I belive in God, God will save me!’

Finally the flood rises too far, the man drowns, dies, and goes to the pearly gates, where He meets God. He says ‘God, I trusted in you, why didn’t you save me?’ With a sigh, God says ‘Well, I sent you a boat, a helicopter and a plane, what more did you want?’

Moral is - trust to God to help us, for sure, but realise that that help comes most often through the ORDINARY means He’s given us, including ordinary medical science for matters of health.

Are you defining amnioscentisis as an ORDINARY means of determining something? It would be ordinary ifi it did not contain the risk of miscarriage. What makes it extraordinary is the possibility of miscarriage - no matter how small, if the case is simply to become prepared mentally for a special needs child.

As far as your story goes - the man who needed saving is free to do with his life what he wants to do - even if it is stupid and a waste of the things hta God has sent to him. But we are not so free to play such games of chance when it comes to the lives of others - especially the innocent unborn.

 

[LilyM]

Are you defining amnioscentisis as an ORDINARY means of determining something? It would be ordinary ifi it did not contain the risk of miscarriage. What makes it extraordinary is the possibility of miscarriage - no matter how small, if the case is simply to become prepared mentally for a special needs child.

As far as your story goes - the man who needed saving is free to do with his life what he wants to do - even if it is stupid and a waste of the things hta God has sent to him. But we are not so free to play such games of chance when it comes to the lives of others - especially the innocent unborn.

Well, an amnio would certainly be more ‘ordinary’ than sitting on your hands and doing nothing to find out, especially when the sitting on your hands itself could mean that the baby needlessly dies in utero.

And no, a person can’t ‘play games of chance’ with their own lives any more than with the lives of others, we are responsible to God for our lives, which is why suicide is a grave sin. Martyrdom isn’t, but the examples given here hardly constitute martyrdom.

But, as the obverse side of that obligation to look after our lives, refusing to take a medical test myself when the risks of death or permanent injury from such a test (there is always at least some risk) are outweighed by the benefits of a correct diagnosis would be a sinful neglect of the life God gave me. Same with having your baby tested in similar circumstances.

Again, I never said a person was bound to use amnio, just that they ARE bound to factor in the potential loss of life if the baby has DS which ISN’T diagnosed in utero. What the statistical likelihood is of that happening I don’t know.

And such a parent must also consider the other factors - the advisability of being certain about it for other reasons - and weigh all of them up against the risk of death from miscarriage.

 

[KathleenElsie]

Well, an amnio would certainly be more ‘ordinary’ than sitting on your hands and doing nothing to find out, especially when the sitting on your hands itself could mean that the baby needlessly dies in utero.

And no, a person can’t ‘play games of chance’ with their own lives any more than with the lives of others, we are responsible to God for our lives, which is why suicide is a grave sin. Martyrdom isn’t, but the examples given here hardly constitute martyrdom.

But, as the obverse side of that obligation to look after our lives, refusing to take a medical test myself when the risks of death or permanent injury from such a test (there is always at least some risk) are outweighed by the benefits of a correct diagnosis would be a sinful neglect of the life God gave me. Same with having your baby tested in similar circumstances.

Again, I never said a person was bound to use amnio, just that they ARE bound to factor in the potential loss of life if the baby has DS which ISN’T diagnosed in utero. What the statistical likelihood is of that happening I don’t know.

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And such a parent must also consider the other factors - the advisability of being certain about it for other reasons - and weigh all of them up against the risk of death from miscarriage.

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Obstetrics & Gynecology

• 1996;88:114-118
  © 1996 by The American College of Obstetricians and Gynecologists
  314 patients
  Women who had a genetic amniocentesis performed at 11-14 weeks were significantly more likely to have post-procedure amniotic fluid leakage (2.9 versus 0.2%), post-procedure vaginal bleeding (1.9 versus 0.2%), and a fetal loss within 30 days of the amniocentesis (2.2 versus 0.2%) than women undergoing genetic amniocentesis at 16-19 weeks’ gestation.
  Four of the seven patients (57%) with a fetal loss within 30 days of an early amniocentesis had procedure-related complications, such as amniotic fluid leakage, bleeding, and infection, that caused the pregnancy to be lost.
  **

 

[LilyM]

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First of all those are 12 years old - what are the most recent stats?

Secondly, for the sake of completeness of knowledge, what percentage of babies with undiagnosed DS die in utero from complications related to their DS?

 

[Kay_Cee]

I had my first pregnancy at age 36. The Alpha Fetal Protein test showed that the chances of my baby having Down’s was about 1 : 90. My OB/GYN scheduled me for an amnio.

The day before the test I had my regular appointment. I had read up on amnios, and I was distressed that it could cause a miscarriage. I asked my doctor why I needed the test. She was blunt, “So you can abort if it’s positive.”

I told her I wouldn’t abort even if it were positive, so why did I need the test? She paused, then told me there was no way she would put her own baby at risk with an amnio, that the incidence of miscarriage was actually higher than was generally known. I of course opted to go without the amnio.

So how did it turn out? Well, this past June my baby was valedictorian of her senior class. She received five scholarships, including a full tuition scholarship to a renowned university.

It could have gone the other way. I wouldn’t have loved her any less if it had.

 

[LilyM]

I had my first pregnancy at age 36. The Alpha Fetal Protein test showed that the chances of my baby having Down’s was about 1 : 90. My OB/GYN scheduled me for an amnio.

The day before the test I had my regular appointment. I had read up on amnios, and I was distressed that it could cause a miscarriage. I asked my doctor why I needed the test. She was blunt, “So you can abort if it’s positive.”

I told her I wouldn’t abort even if it were positive, so why did I need the test? She paused, then told me there was no way she would put her own baby at risk with an amnio, that the incidence of miscarriage was actually higher than was generally known. I of course opted to go without the amnio.

So how did it turn out? Well, this past June my baby was valedictorian of her senior class. She received five scholarships, including a full tuition scholarship to a renowned university.

It could have gone the other way. I wouldn’t have loved her any less if it had.

Ai yi yi, I’ll say this again slowly for you …

There is a significantly higher than normal chance of miscarriage or stillbirth with a baby which has Downs, BECAUSE of its Downs, if it’s not diagnosed in utero.

In other words failure to diagnose with an amnio can directly lead to needless death of the baby.

All the love in the world doesn’t take the place of a test (assuming the benefits of finding the Downs outweigh the risk of miscarriage from the amnio) which could save the baby’s life.

What is it about such a simple statement that is so difficult for people to understand?

Of course it’s not about loving her less - it’s about being properly prepared … for the preganancy and birth, which themselves can be more complicated with DS fetuses as I’ve said, as well as the child’s life thereafter.

Love has nowt to do wi’ it, dearie. It’s about the power (which just may save that child’s life in utero) that knowledge brings.

 

[KathleenElsie]

Ai yi yi, I’ll say this again slowly for you …

There is a significantly higher than normal chance of miscarriage or stillbirth with a baby which has Downs, BECAUSE of its Downs, if it’s not diagnosed in utero.

In other words failure to diagnose with an amnio can directly lead to needless death of the baby.

All the love in the world doesn’t take the place of a test (assuming the benefits of finding the Downs outweigh the risk of miscarriage from the amnio) which could save the baby’s life.

What is it about such a simple statement that is so difficult for people to understand?

Of course it’s not about loving her less - it’s about being properly prepared … for the preganancy and birth, which themselves can be more complicated with DS fetuses as I’ve said, as well as the child’s life thereafter.

Love has nowt to do wi’ it, dearie. It’s about the power (which just may save that child’s life in utero) that knowledge brings.

You asked me about the stats now. Well you are the one telling us about the number of deaths in utero and in the birthing process. So you must have those stats. The OBs I have known and would go to (pro life only) usually have the necessary equipment and personnel available at each and every birth if the child “could” need the care.

Now if the parents go to a midwife, those that are considered at risk are delivered at a hospital in one of the birthing rooms with all the modern advantages also.

I do not know what it is like Down Under. Maybe the care depends on the testing. But as I said I don’t know.

 

[manualman]

Our third child was considered higher risk because we’re getting up there in years and because of complications in preg#2.

We were asked if we wanted to do amnio testing. I asked what it was for. A: to check for certain kinds of birth defect such as Down’s Syndrome.

Q: What can you do to fix anything likely to be found through amnio?
A: Nothing really in your case (genetic history, etc).

Q: Are there risks?
A: Small level of risk as with any invasive procedure.

Q: So there’s nothing that can be done if the test comes back positive and there is some level of risk?
A: Correct.

Us: No way.

The word was never used, but it was very clear to me that we were offered the test so that we could choose to abort or not if things came back Down’s Syndrome. I read recently that close to 90% of Down’s babies are aborted these days. sigh.

 

[BOBKAT]

let me set all of you straight, who think that I would rather trust God than go to the doctor. I was not about to do an Amnio because of the risk of losing the baby, it took my husband and I many years before we even conceived. When I had Annie I didn’t have the test and neither one of my doctors suggested it I was only 34, my second child was born right before I turned 36 and I wasn’t ask if I wanted one than. I see doctors all the time, Annie does have a heart condition and a thyroid condition so we are always at the doctors. Some people need to prepare I did not. Some people want to know so they can abort for me it was not an option, So please before you judge me ask me to clarify.

God Bless,
Kathleen

PS I wouldn’t trade her for all the tea in China…She is a most precious jewel from heaven.

 

[Kay_Cee]

Ai yi yi, I’ll say this again slowly for you …

There is a significantly higher than normal chance of miscarriage or stillbirth with a baby which has Downs, BECAUSE of its Downs, if it’s not diagnosed in utero.

In other words failure to diagnose with an amnio can directly lead to needless death of the baby.

All the love in the world doesn’t take the place of a test (assuming the benefits of finding the Downs outweigh the risk of miscarriage from the amnio) which could save the baby’s life.

What is it about such a simple statement that is so difficult for people to understand?

Of course it’s not about loving her less - it’s about being properly prepared … for the preganancy and birth, which themselves can be more complicated with DS fetuses as I’ve said, as well as the child’s life thereafter.

Love has nowt to do wi’ it, dearie. It’s about the power (which just may save that child’s life in utero) that knowledge brings.

Okay, and I’ll say this slowwwly for you, since you didn’t understand.

My doctor advised against the amnio.

What is it about such a simple statement that is so difficult for people to understand?

 

[lizaanne]

LilyM - I agree - I would prefer to be prepared if my child was to have special needs. The beginning of life is so very crucial, I would want to be prepared to know what to expect, what is normal, what is not, and how to react and ask intelligent questions of my doctor if and when that is needed.

I would never EVER abort, regardless of the results. But I feel I would be doing my child an injustice if I were to just allow them to pop into the world to a mother and father who didn’t have a clue that they had needs beyond those of a healthy child.

Certainly a touchy subject - and I would never expect anyone to feel the same way I do about this. I can clearly see why there are those who would never have any testing done and just want to deal with it if/when they have to. I personally would want to know ahead of time if at all possible.

~Liza

 

[BOBKAT]

All this back and forth on wether or not to have testing is so not necessary. This testing comes with risk and so we have people who opt out of it and leave it in God’s hands, absolutely nothing wrong with that and than we have those who want to know and go for it and there is absolutely nothing wrong with wanting to know. Either way there is a risk so lets all agree. As for Down Syndrome oppose to spina bifida there really is nothing in utero that can be down so other than wanting to prepare I see no other reason for the test. Spina bifida testing is crucial becaue that has a proven track record for knowing before hand. This is starting to sound like a certian senator who suggest that we don’t care about our disabled children because we are against embryonic stem cell research. We know that isn’t true so let us all respect the fact that we choose different paths and ones that are not against teaching so long as they are done for the right reasons.

God Bless
Kathleen

 

[krissy343]

Wow!! I haven’t caught up with this thread in awhile. I so very upset with the downs syndrome abortion statistics when I initially posted this thread that I guess I didn’t take the time to really think about the postive results of testing . I still don’t know if I would have the testing done, but I definitely know I wouldn’t opt for the amino testing. Thank you so much for all of the heartfelt (name removed by moderator)ut. It has really served to help me look at the positives of the testing rather than just the negatives.

 

[seekerz]

Wow!! I haven’t caught up with this thread in awhile. I so very upset with the downs syndrome abortion statistics when I initially posted this thread that I guess I didn’t take the time to really think about the postive results of testing . I still don’t know if I would have the testing done, but I definitely know I wouldn’t opt for the amino testing. Thank you so much for all of the heartfelt (name removed by moderator)ut. It has really served to help me look at the positives of the testing rather than just the negatives.

One thing discussions on this forum have done for me is taught me to look again at issues on which I once held categorical opinions. Now I understand why the Church leaves some decisions to our informed consciences…

 

[elts1956]

We tested. We never considered or would have considered “terminating” a pregnancy. (you should really not use euphamisms for something like this - it’s abortion)

You are overgeneralizing to call the test itself “horrible”. While some people might use it for selfish reasons, this is not the fault of the test, only the parents who have that mindset.

I had some other genetic tendancies that might have required special neonatal care. It was important to know before the birth, if possible, in order to have the baby at a hospital with the right facilities. The down’s testing was just part of the overall screening process.

I also saw an article and picture of a Dr. treating an in utero baby with spina bifida. Apparently, if treated, this terrible illness can be repaired. I think this was also the time the little one reached up out of it’s mother’s womb and placed it’s hand around the Dr’s finger.

 

[KathleenElsie]

I also saw an article and picture of a Dr. treating an in utero baby with spina bifida. Apparently, if treated, this terrible illness can be repaired. I think this was also the time the little one reached up out of it’s mother’s womb and placed it’s hand around the Dr’s finger.

Yes and the test for spina bifida can lead to a better life. The advances allow the Dr to fix the problem while the child is still in utero.

The test for Downs leads to a 90% (the information from medical sources) termination (abortion) of the child.

 

[lizaanne]

The test for Downs leads to a 90% (the information from medical sources) termination (abortion) of the child.

ONLY for those willing to take that route. The percentage is ZERO for those who would only wish to be informed.

The TEST does not lead to the abortion - the parents priorities lead to the abortion. Vast difference. The test is not responsible for the death of the children, the parents are.

~Liza

 

[elts1956]

Yes and the test for spina bifida can lead to a better life. The advances allow the Dr to fix the problem while the child is still in utero.

The test for Downs leads to a 90% (the information from medical sources) termination (abortion) of the child.

Of course it is the parent’s decision to abort the baby. But I would question the parent’s motives in having the test at all. Does their decision mean that they feel abortion is the way out if the test comes back positive for Downs? Does it mean they hope if there is something abnormal with the baby, it can be repaired in utero? The fact that the results of a positve Downs Syndrome test leads to 90% termination of the baby leads me to think that those 90% of the parents had motives that were not in the best interest of the child, but in their own interest.

 

[elts1956]

Yes and the test for spina bifida can lead to a better life. The advances allow the Dr to fix the problem while the child is still in utero.

The test for Downs leads to a 90% (the information from medical sources) termination (abortion) of the child.

In my opinion, you are right on the money. There is nothing inherently evil about the test, but as with any medical procedure, the benefit should outweigh the potential harm and cost.

If it is used as an excuse to abort, then no good comes of it. If it used to help the parents prepare in the event of special needs child, then most likely the good is greater than the currently understood risk. Obviously, if greater risk was discovered, the balance might tip the other direction.

I hope that people will be charitable and give parents the benefit of the doubt when it comes to issues that are not black and white. I find it very hurtful when blanket statements are made about things like genetic testing, breastfeeding, and the such. Unless a person knows extremely well another’s circumstance and heart, it seems better to me to err on the side of good intent.

Paul

Hi Paul. Congrats on the upcoming Tiber swim. Glad to have you aboard. I understand what you are saying about another’s circumstance and heart. We don’t judge the sinner, but do judge the sin.

To help you with your sidestroke, please check the Catholic Catechism for their spoken law on abortion. Supporting, or having an abortion is a non negotiable rule for Catholics as is Euthanasia, Embryonic Stem Cell research, Cloning and Homosexual marriage. Hope that helps.

 

[KathleenElsie]

You asked me about the stats now. Well you are the one telling us about the number of deaths in utero and in the birthing process. So you must have those stats. The OBs I have known and would go to (pro life only) usually have the necessary equipment and personnel available at each and every birth if the child “could” need the care.

Now if the parents go to a midwife, those that are considered at risk are delivered at a hospital in one of the birthing rooms with all the modern advantages also.

I do not know what it is like Down Under. Maybe the care depends on the testing. But as I said I don’t know.

The poster I asked this question of LillyM (stats #s) never answered this question nor any other questions posed of her by other posters.