Parents' experiences of screening for Down's: How do views change throughout pregnancy?

Help me!

Hi there. I'm a medical student who is part of a small group doing a
project looking into various aspects of pregnant women's and couples'
experiences of testing their unborn baby for Down's syndrome,
receiving a diagnosis one way or the other, and the after-effects of
that process. I'm particularly interested in finding out about parents
views of testing and whether they feel the same way after going ahead
with testing or not.

Please help me! What are *your* views and experiences? My hope is that
this discussion will not only help me to do my project, but that it
will also provide food for thought for parents to be who are currently
facing the issues raised. If you're immediately struck by something to
say, go right ahead. Or, to get the ball rolling, here are a few
questions I'd be interested to hear responses on:

* When you were offered testing, what did you decide?
* What were the most important factors influencing your decision?
(e.g. risks of testing v. the prospect of having a child with Down's;
previous personal or family/friends' experience of going through the
same process; religious/cultural/social considerations; personal views/
moral principals; advice from health professionals; etc.)
* If you underwent any of the various tests, how did the testing
process (and the waiting for results) affect you?
* Whether you underwent testing or not, did the end result go as you
imagined? Would you have done anything differently in hindsight.
* If you have already had the baby, how do you feel now, whether he or
she has Down's or not?

As this area touches on a variety of sensitive issues, feel free to
email me privately if there are things you might not want to say
publically. I would like to use some of the information I glean from
this in my presentation, but if there is anything you do NOT want me
to say, let me know (although bear in mind posting on this group is
already open to whoever wishes to join!) I will not say anything in a
way that would allow someone to trace it back to an individual, either
online or in the real world. I might like to quote people directly -
again anonymously; if I do, I will ask that person if it is ok
beforehand. Examples of how I might present information include "Ms X
said that having a nephew with Down's convinced him that testing was
not worth it, as she would keep the baby in either case", or "3 people
out the 10 respondents said they found the prospect of having a baby
with Down's harder to face after they found they were at greater
risk".

THANK YOU for reading this far - I guess this is a pretty unusual
discussion topic! I'd appreciate anything you have to say on this.

Cheers!
Phil

Philthemedic wrote:
Help me!

Hi there. I'm a medical student who is part of a small group doing a
project looking into various aspects of pregnant women's and couples'
experiences of testing their unborn baby for Down's syndrome,
receiving a diagnosis one way or the other, and the after-effects of
that process. I'm particularly interested in finding out about parents
views of testing and whether they feel the same way after going ahead
with testing or not.

Please help me! What are *your* views and experiences? My hope is that
this discussion will not only help me to do my project, but that it
will also provide food for thought for parents to be who are currently
facing the issues raised.

Well, this may or may not be in time to help out as I don't know when
you're writing the paper, but here are my reasons for deciding *not* to
go ahead with any testing. (Posted and e-mailed – posted because I
don't mind at all who reads it and, you never know, it might help
someone with a similar decision, and e-mailed because I don't know
whether you're still following this thread.)

The background – I'm a doctor (general practitioner), almost 37
(therefore in the higher-risk age-group), with one child (who does not
have Down's Syndrome) who was conceived when I was 33 and born when I
was 34.

My husband and I started from the point that a diagnosis of Down's would
not be something either of us saw as sufficient reason to opt for an
abortion. My husband used to know someone with Down's who he thought
was a pretty cool and funny guy, so he didn't see Down's as being that
big a problem. I've read several first-hand accounts of having a Down's
child, plus some accounts of facing abortion due to disability, and
there did seem to be this very consistent theme of the women who'd had
babies with Down's feeling that the joy they had far outweighed the
problems, while the women who'd had abortions only seemed to be left
with the pain. And I'm someone who likes to rise to a challenge rather
than turn away from it; whatever the problems involved in having a child
with Down's syndrome, I felt that dealing with them would be something
I'd ultimately find less difficult than dealing with a lifetime of
wondering whether or not I could have dealt with them if I'd tried.

Having made that decision, I worked backwards from there. Since I
wouldn't want an abortion, I didn't want amniocentesis because I saw no
point in subjecting myself to even a small risk of miscarriage for an
investigation that wouldn't change any decision I make. Since I
wouldn't want amniocentesis, I didn't want the triple test because I saw
no point in subjecting myself to the worry and uncertainty of a result
that would, after all, just amount to giving me the *odds* of the baby
having Down's (what's the point in that, for goodness' sake? It's not
as though I was planning to place a bet on it), when *that* wouldn't
change any decision I made.

My husband did ask me whether it would be worth getting the triple test
so that I would have one less thing to worry about during pregnancy if
it did come back low risk. I told him that since I wasn't worried about
Down's anyway (it's not that I didn't believe it could happen, just that
I wasn't *worried* about it – as far as I was concerned, if it happened
it happened and I'd deal with it then) the only possible result the test
could have on my worry levels was to cause me to be worried when I
wasn't already. He was OK with that.

I didn't actually think about or look into nuchal scanning. It wasn't
available as a routine NHS test, so turning it down wasn't an issue – I
would have had to make an active decision to seek it out, and then pay
for it. Given the uncertainty of the results and, above all, the fact
that, once again, it wouldn't have changed my decision, I didn't even
think about going that route.

At the time, I remember thinking that if there was a test that combined
the lack of risk of the triple test with the certainty of amniocentesis,
I'd have that done. Later on, I changed my mind about that – even if
there was a zero-risk test that could give me a definite answer, I now
feel I would choose not to take it. The only thing I'd be able to do
with the results, after all, would be to sit and fret about them for
longer. If we found out we had a baby with Down's, that was bound to be
a shock and a disappointment whenever we found out. But I'd rather go
through that shock and disappointment at a point where it was mitigated
for everyone by the reality of a wonderful, lovable baby rather than an
abstract.

Has having one child (without Down's) changed my views at all? It
hasn't changed my decision as far as any subsequent pregnancies are
concerned, but it has made some changes to the way I view some of the
factors. I think, looking back, that I had a rather excessively
romanticised view of what the difficulties of raising a disabled child
might be, largely because I had a rather romanticised view of the
difficulties of raising *any* child – no matter how much you might know
in the abstract that it involves an enormous amount of work, there
simply isn't anything that can prepare you for going through it, and I'm
less sanguine than I was about the thought of what it would be like to
add the problems caused by some sort of disability into the situation.
But, on the other side of things, my belief that I wouldn't want to have
an abortion just because of finding out the baby had Down's syndrome is
no longer an abstract logically-worked-out belief, but a knowledge that
it would just not be an option for me in the same way that cutting off
my own leg wouldn't be an option. I could not bring myself to do it,
and that's that.

I suppose I can't really know how I'd be feeling about the matter now if
my son had turned out to have Down's syndrome. All I know is that
that's how I feel now, and I have no regrets.


All the best,

Sarah
--
http://www.goodenoughmummy.typepad.com

"That which can be destroyed by the truth, should be" - P. C. Hodgell

Sarah Vaughan wrote:

snip

Thank you for saying pretty much exactly what I would have said had I
been able to find the words to explain it.
Downs syndrome isn't the end of the world. And for me it's definitely no
reason for an abortion, but then again I don't think I could ever deal
with an abortion anyway because of my history of depression which
basically started with a miscarriage. I don't think I could handle
loosing another child, especially one whom I haven't met yet.

And now, totally OT: OMG I love your email adress. My sons name is Sam,
short for Samuel. When he was really little and going through temper
tantrums a friend of mine would call him Samael.
And Nanny Ogg, well, she's just one very cool character, and since
Pratchett is about the only thing that can successfully make me fall
asleep*... I want an adress just like your! *whine* ;-)

cu
nicole




*NOT in a bad way at all, it's just that I've read all the books so many
times it's easy to drift off while reading them.

Excellent message Sarah, thanks for taking the time to do that.

Having made that decision, I worked backwards from there. Since I
wouldn't want an abortion, I didn't want amniocentesis because I saw no
point in subjecting myself to even a small risk of miscarriage for an
investigation that wouldn't change any decision I make. Since I wouldn't
want amniocentesis, I didn't want the triple test because I saw no point
in subjecting myself to the worry and uncertainty of a result that would,
after all, just amount to giving me the *odds* of the baby having Down's
(what's the point in that, for goodness' sake? It's not as though I was
planning to place a bet on it), when *that* wouldn't change any decision I
made.

I came to a similar conclusion to you, but for different reasons, I'm just
one of those people who believes abortion is wrong, primarily because I'm a
Christian, but I'd struggle with it a lot more if it wasn't for the kind of
factors you discussed.

One thing that came up for me between pregnancies was the possibility that
the triple test could come up with other helpful info, but I concluded that
whilst in future that may be the case, what we know doesn't have a strong
predictive value and it's only retrospectively it's realised the funny
result might mean something.

Do you (or anyone else, for that matter), happen to know how reliable 2nd
trimester ultrasound is at showing up fatal anomolies, am I right in
thinking that the non compatible with life trisomies have many more soft
markers than downs, so would fairly reliably show up? Information I can find
doesn't really deal with this in clear manner as it tends to come from the
point of view of wanting to find all anomolies, not just those that would be
fatal fairly early on, for various reasons, I think I would need to find
these out, but don't need to find the others out.

Cheers

Anne

On May 14, 7:32 am, Philthemedic wrote:
Help me!

Hi there. I'm a medical student who is part of a small group doing a
project looking into various aspects of pregnant women's and couples'
experiences of testing their unborn baby for Down's syndrome,
receiving a diagnosis one way or the other, and the after-effects of
that process. I'm particularly interested in finding out about parents
views of testing and whether they feel the same way after going ahead
with testing or not.

Please help me! What are *your* views and experiences? My hope is that
this discussion will not only help me to do my project, but that it
will also provide food for thought for parents to be who are currently
facing the issues raised. If you're immediately struck by something to
say, go right ahead. Or, to get the ball rolling, here are a few
questions I'd be interested to hear responses on:


Background: I was a few weeks shy of 36 when I conceived, 36 when DD
was born. We planned a midwife attended homebirth, however due to a
prior miscarriage had been seeing an OB and decided to continue with
her til 20 weeks. We had initially decided no testing because the
triple screen is notorious for 'false positives' (not really positive
as in = Downs, but high likelihood indicators) and I really didn't
want that stress. I had no desire to have an amnio, and we had already
decided we would not terminate (we may decide differently in
subsequent pregnancies). So we figured we'd wait til the 20 week
ultrasound, and if that indicated Downs, we'd test further and we
still had 20 ish weeks to learn about it.


* When you were offered testing, what did you decide?

My OB was insistent, and I got tired of arguing and gave in. We did
the screen, then I promptly put it out of my mind.

* What were the most important factors influencing your decision?
(e.g. risks of testing v. the prospect of having a child with Down's;

The triple screen is low risk, so I only didn't want it for the stress
if would cause. I manage to avoid the stress by focusing on other
things. I did not want an aminio due to the risks, and discussed with
my OB the option of a level II u/s if necessary.

previous personal or family/friends' experience of going through the
same process; religious/cultural/social considerations; personal views/
moral principals; advice from health professionals; etc.)

A colleague of mind just gave birth to a Downs baby. It was diagnosed
at about 16 weeks. I know initially it was very difficult for them,
although they didn't consider terminating. She told me when the news
had sunk in enough and they'd accepted it. There wasa lot of concern
other medical issues, but he appears to be quite healthy at this
stage. That gives me hope. While I am not sure how we would handle it
if we got the same news, it helps to know another family experiencing
it and dealing with it well.

* If you underwent any of the various tests, how did the testing
process (and the waiting for results) affect you?

As said above, I managed to put it out of my mind. I'm not sure how, I
think i had so much going on otherwise I was able to forget it for
awhile. I also was convinced that all was well. Hard to explain, but
after the first m/c, I somehow 'knew' this baby would be fine.

* Whether you underwent testing or not, did the end result go as you
imagined? Would you have done anything differently in hindsight.

We'll have to discuss it again. We are not against termination, just
didn't want to consider it last time. If we decide in advance we won't
terminate, then we'll wait til the 20 wk u/s for news of any problems
and go from there. I won' tbother with the triple screen at all. If,
OTOH, we decide we would terminate, then we'll do the screening and
then amnio if necessary.

* If you have already had the baby, how do you feel now, whether he or
she has Down's or not?

Well, DD doesn't have Downs, which I admit is a relief. She had other
issues at birth and we almost lost her.

"Philthemedic" wrote in message
Please help me! What are *your* views and experiences?

I've had three pregnancies at age 29, 31, and 37.

* When you were offered testing, what did you decide?

Initial testing (blood test) was offered at 12 weeks.
#1 - there was a mix up and they did the test without my knowing.
#2 - I decided to do the blood test.
#3 - I declined the blood test.

* What were the most important factors influencing your decision?

#1 - N/A - had it without consent. It was slightly off and was followed up
by an ultrasound to better date the pregnancy and when the results were run
again with that new info it was OK so testing ended there.

#2 - Wanted the info - just to know. Merely offered by the doctor with no
pressure either way. It came back 1:10 chance of downs. I was not actually
told this number until after the second ratio was available. I had an
ultrasound to get better dates and the new results were, IIRC, 1:50 risk.
The doctor explained the test, what the results did and did not mean and my
options from there (ultrasound vs. amnio vs. nothing). I also did some
research on my own. I new I would not terminate no matter what and I knew
I wasn't going to do anything risky like an amnio so we decided to have the
Level II ultrasound. Baby did not have downs btw.

Termination is against my religious views but really - not terminating and
no amnio's is just something I feel in my heart. There is a risk of having
a baby with downs, and there is a risk of miscarriage with the amnio. I
would be devestated if I purposefully did something that resulted in a
miscarriage (of a baby with or without downs) and so *that* risk carried far
more weight then the risk of having a baby with downs - for me.

#3 - Decided having the information wasn't worth the added stress of going
through the process . This was a different doctor but she merely offered
it and was fine with it when I declined. I had already done the soul
searching and new I wasn't going to terminate or even have an amnio done so
what was the point? In my mind, there wasn't one. I did have a routine
ultrasound at 20wks planned.

* If you underwent any of the various tests, how did the testing
process (and the waiting for results) affect you?

The testing itself was painless but it created a lot of worry etc.

* Whether you underwent testing or not, did the end result go as you
imagined? Would you have done anything differently in hindsight.

Well I opted out in my 3rd pregnancy and I'd opt out again if I ever have
another. For me it just a 'know now or know at birth' question and since
the actual risk is small I'd rather take my chances and deal with it at
birth. I always birth in a hospital though. If I was planning a home birth
I might change my mind - not sure.

* If you have already had the baby, how do you feel now, whether he or
she has Down's or not?

None of my children have down's syndrome. I assume I would not regret the
decision to not do the testing if I did have a baby w/downs but i can't
actually know that because it is only theoretical.


--
Nikki, mama to
Hunter 4/99
Luke 4/01
Brock 4/06
Ben 4/06

This brings up interesting things that I didn't think of the first time.
With DD I just had the mindset of "test anything/everything you can via
optional bloodwork". My insurance covered it all, and I felt like I wanted
to be informed. But what I wasn't thinking of was that I *don't* feel that
way about invasice testing such as amniocentesis- I've never had it but
really, really don't want it, especially not just because the AFP shows a
"higher" odds for Down Syndrome. So with that in mind, why would I have the
AFP then, if I wouldn't want the amnio? I don't know, I guess because when
it showed up ok then I felt a little bit less worried, I guess I wanted the
AFP to be normal so I'd feel ok. I didn't think it through as to what I'd
feel or do if it came back indicating something else.

This time my insurance has changed and we have a high deductible and pay for
things that used to be covered, so I am not sure whether I will consent to
AFP. I still wouldn't want an amnio so I'm thinking, no?

beyond the pale wrote:

This time my insurance has changed and we have a high deductible and pay for
things that used to be covered, so I am not sure whether I will consent to
AFP. I still wouldn't want an amnio so I'm thinking, no?

The triple or quad screen is a screening test to
see if you're in a higher risk pool that might benefit from
more invasive screening to get a definite diagnosis for
Downs Syndrome. It also can indicate higher risk for a
neural tube defect, and perhaps one or two other things
(I forget--maybe another trisomy?). A neural tube defect
would be diagnosed with ultrasound, so ultimately, it really
does get down to whether you want to do something invasive
to definitively diagnose DS.
The argument at that point becomes one about what is
the value of knowing about DS in advance. If you would terminate
for DS, then there is obvious utility to that information.
If you would not terminate, then the question is whether
there's something else you'd do differently. Some people
feel like they would need the time to prepare emotionally;
others feel that they'd rather have a peaceful pregnancy
and deal with DS when/if it shows up. In most cases,
there isn't a medical need to have specialists on hand
at the birth of a baby with DS, but depending on one's
birth plans, it might be something one discusses with
caregivers to see if one would make any changes in birth
plans if the baby had DS. But ultimately, if you wouldn't
change anything, there's very little utility in having
the diagnosis, and if it's not worth it to you personally
to have a definitive diagnosis, there isn't a lot of utility
in having the screening, unless you're one of those rare
people who would rather go through the remainder of the
pregnancy on the fence, knowing there was an elevated risk
but that the vast majority of babies with a positive screen
do not have DS.

Best wishes,
Ericka
(with 3 pregnancies and no AFP/triple screen/quad screen and
no children with DS)

"Anne Rogers" wrote in message
news

Do you (or anyone else, for that matter), happen to know how reliable 2nd
trimester ultrasound is at showing up fatal anomolies, am I right in
thinking that the non compatible with life trisomies have many more soft
markers than downs, so would fairly reliably show up? Information I can
find doesn't really deal with this in clear manner as it tends to come
from the point of view of wanting to find all anomolies, not just those
that would be fatal fairly early on, for various reasons, I think I would
need to find these out, but don't need to find the others out.

Cheers

Anne


I'm not sure I really understand the question. Since the only way to find
any anomolies is to look, the person looking is going to see any anomoly,
whether it's a fatal one or not. And often times it's not a one single
fatal anomoly, but instead a grouping of lesser anomolies which points to a
possible syndrome, which may or may not be incompatable with life.

The only option I can think of is to let the doctor know that you want to be
told of any issues that look fatal or very very serious, but not for
anything that is just marginal or anomolous but not incompatible with life.
But if you watched the person conducting the u/s, I think you'd get a sense
of the anomolies that they were finding, if they found some, because they'd
spend a LOT of time going over and over certain areas, and spend much more
time on those places than on others. And even then, if they said, "Okay,
nothing fatal", you might still be rather worried that there was something
wrong with your child, but not know what it was, but you know that something
was wrong because they spent so long looking at the heart or spine or brain,
or whatever.

As I said, maybe I misunderstood the question.
--

Jamie
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Addison Grace -- 09/30/04

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I think you understood the question, I just want to find out about the stuff
that would be fatal, that's going to be obvious if it's some kind of
physical abnormality, but I'm not sure if the other trisomies would show up
on ultrasound, I mean, Downs will often show something up on ultrasound, but
not necessarily enough to make a strong connection. I'm not a medic, so I'm
not sure exactly how t-13 and 18 present and why that makes them
incompatible with life, and therefore whether or not they'd show up on
ultrasound, but I think they are something that the triple test is screening
for.

I guess I'm just going to have to spend sometime getting thoroughly
educated, it was easy previously, I wouldn't do anything regardless, so I
didn't need to know, but knowing how damaging late pregnancy and delivery
was, it just doesn't make sense to carry to full term if the baby isn't
going to make it.

Cheers

Anne