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

(I'm currently 6 wks pg!).

congratulations!!!!!!!!!

I recall my sonographer writing with great distate that 'Jeni refused the
triple test!' on my notes.

our scans must have been around the same time if I'm remembering rightly, I
also got a bizarre reaction when I said I wasn't going to have the triple
test, they looked at me as if I had grown two heads. I don't recall anything
being mentioned at the scan first time around, I wonder if they had changed
the procedure recently, so that scanners were telling you to go and find out
the date you should have it etc. hence they weren't used to the response and
were only slowly learning that it's not something everyone had. When I then
said nor was I having a 20 week scan I think they thought I had gone
absolutly nuts, as it happened we'd moved (temporarily) by that time anyway,
but I don't think we knew it was definite at that stage.

Cheers

Anne

On May 29, 9:39 am, "beyond the pale"
wrote:
"Jamie Clark" wrote

Just in general, what do doctors or ultrasound technicians do when they see
something wrong or of concern- something that they *think* looks wrong? I
mean obviously they check it out--but do they tell you right away or do they
try to keep quiet about it? I have always wondered this. I'd hope they'd
tell you. I just had my ultrassound today and I always ask "Does everything
look ok?" which I assume most people can't help but ask. But what if I
didn't ask, and they found something, would they tell me or would they tell
the doctor and then would he have me come in or tell me at my next
appointment, or what?

Do not be so sure that you feel this way. Just last night I called
someone to come in for a follow up appointment today because their
child had a high white blood cell count. What was I concerned about?
That the child might have leukemia. What is the well over 99% chance
of what the child has? An infection that's being treated by the
antibiotics that the doctor prescribed at the visit earlier in the
day. What did I do? Call the pediatric oncologist to ask them to
look at the blood smear today to be sure, and call the mom to say that
the infection fighting cells were really high, which probably just
means that her body is responding strongly to the infection, but we'd
like to see her tomorrow just to be sure that she's getting better.
It would serve absolutely no useful purpose to tell the mom that we're
double checking for cancer. If her kid has it she'll find out soon
enough and there's nothing she can do about it in the intervening 18
hours.

Ultrasound technicians are often not allowed to give their read to the
patient because they're not radiologists. I've seen all kinds of
crazy hypotheses among various medical professionals about what might
be going on with patients. The less training the person has the less
grounded those hypotheses sometimes are in reality. As doctors our
job is to always have the rare but dreaded possibility on our radar
screens and to double check for it even if the odds are very, very
small. You don't want to inflict truly awful news to someone if it's
just a "maybe" (unless treatment needs to get started immediately).

I used to feel the way you do before I started working in medicine. I
now have enough experience to know that truly sometimes ignorance is
bliss. My brother recently had a large benign tumor taken out of his
neck, about at the level where Christopher Reeves was injured (ie, had
surgery gone badly he could have ended up a ventilator dependent
quadriplegic). When he mentioned at a pre-op visit to the
neurosurgeon that his sister was a doctor, he kindly gave my brother
his cell phone number and said I could call him if I wished. It took
me quite some time to call because I did not want to know very many
details about the tumor until after the surgery, and I definitely did
not want to see the scans until after the surgery. Before I was in
medicine I would have felt differently, but I've seen enough people
progress from blissful ignorance to anxious waiting to utter
devastation to know that I didn't want to go there unless I had to
(and fortunately my brother's surgery went great).

If something bad was found on a prenatal scan with either a high
likelihood or a certainty you'd probably either be told about it right
after the scan or the OB would make an appointment to go over it with
you. If something was possible but needed further testing they'd tell
you what testing and why and probably give you some odds. But some
small random findings that rarely mean anything but occasionally do
(choroid plexus cysts being the perfect example) and don't add up to a
pattern usually aren't communicated. There's just no point in
terrifying hundreds or thousands of people so that the one person who
has it for real knows about it a little bit earlier.

Kate, ignorant foot soldier of the medical cartel
and the Bug, almost 4 years old

"beyond the pale" wrote in message
...

"Jamie Clark" wrote
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.


Just in general, what do doctors or ultrasound technicians do when they
see something wrong or of concern- something that they *think* looks
wrong? I mean obviously they check it out--but do they tell you right away
or do they try to keep quiet about it? I have always wondered this. I'd
hope they'd tell you. I just had my ultrassound today and I always ask
"Does everything look ok?" which I assume most people can't help but ask.
But what if I didn't ask, and they found something, would they tell me or
would they tell the doctor and then would he have me come in or tell me at
my next appointment, or what?

I meant to ask, but we got busy. It's something that's always bothered me,
I guess I have a fear of a doctor letting me think everything is ok, but
the doctor suspects something is wrong. Why do I think a doctor would do
this? Well, I don't think they would do it with a bad motive or anything,
I think a doctor would want to check it out more thoroughly so they aren't
causing you unnecessary worry. You would not want to make a pregnant woman
distraught and then everything turns out ok.

So I guess this is my question: are most doctors taught in med school to
be very conservative in letting women know if their ultrasounds or tests
might not look right, or are they taught it's best to let them know right
away or what? What are they "supposed" to do?

I'd want to know, it's why I ask. And if a doctor told me that something
looks concerning but he is not sure if it's wrong, he wants to keep an eye
on it, I would not flip out- I'd be glad to be aware of it, and worried,
yes, but I wouldn't jump to conclusions or let myself worry to death over
it. I'd be concerned too, but glad to be informed.


This is one that I know.

While you are on the u/s table, the sonographer would be very quiet (if they
were chatty) and take lots and lots of measurements of one particular area.
If this is your first child, you would have no idea that they were spending
a lot of time looking at the heart or spine or whatever. You have nothing
to compare it to. Instead of it being a 30 minute process, it becomes 45
minutes. Then the u/s would excuse themselves for a moment to go speak to
the doctor. Again, if this is your first u/s, you have no idea that
anything is wrong, and assume that like an x-ray, that the doctor needs to
read it themselves to pronounce the baby "healthy" or that it's common
procedure for the doctor to come in and do a quick part of the scan
themselves. The doctor will come in and spend more time looking at the one
part of the anatomy, and then finish up. Then they ask you to come into the
doctors office and sit down. At this point they will explain what the saw,
what it might mean, and what other testing is available to help get as much
information as possible to pinpoint what is really going on. Additional
testing may be amnio, or fetal echocardiogram, or another u/s at a specialty
clinic, etc. They also may ask you to come back in 2-4 weeks, when the baby
is bigger and the anatomy is easier to see. Sometimes the issue is lack of
clarity, or can be grown out of. If they feel that the issues is very
severe, such as missing brain or really bad spinal or heart issues, they
will talk to you about terminating the pregnancy, and if you are interested,
offer to book you into the hospital within a day or two.

I don't think any doctor would withhold information about the health of your
baby, as it's your right as the parent to make medical decisions for your
child, even when they are in utero. Besides, most things that could be
found may require some additional testing to see the severity, and many
issues are linked to others, so they would want to see if they can find any
additional problems, etc., so they can make as accurate a diagnosis as
possible.
--

Jamie
Earth Angels:
Taylor Marlys -- 01/03/03
Addison Grace -- 09/30/04

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"beyond the pale" wrote in message

Just in general, what do doctors or ultrasound technicians do when they
see something wrong or of concern- something that they *think* looks
wrong?

I had a Level II ultrasound for #2 when the blood test came back so wonky.
They spent forever doing it, the tech wouldn't make a peep, the
perientologist (I think I spelled that wrong) came in and basically did the
whole thing over again and I was freaked out. Everything was fine - they
were just being thorough.

One of my other babies had a soft marker for downs (a cyst of some sort on
the brain). It was really no big deal, the doctor wasn't worried about it,
I wasn't worried about it, but she did tell me (the tech did not) and
updated me with each subsequent ultrasound. I had a lot of ultrasounds
because I was having twins.


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

On May 29, 11:39 am, "beyond the pale"
wrote:
"Jamie Clark" wrote

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.

Just in general, what do doctors or ultrasound technicians do when they see
something wrong or of concern- something that they *think* looks wrong? I
mean obviously they check it out--but do they tell you right away or do they
try to keep quiet about it? I have always wondered this. I'd hope they'd
tell you. I just had my ultrassound today and I always ask "Does everything
look ok?" which I assume most people can't help but ask. But what if I
didn't ask, and they found something, would they tell me or would they tell
the doctor and then would he have me come in or tell me at my next
appointment, or what?

It's my understanding that the U/S technician is not supposed to
discuss the U/S with the parent, that it's the role of the health care
provider to do that.

The first time I had an u/s was when I was fairly certain I was
miscarrying at 11weeks (I started bleeding). The tech couldn't say
anything, although I could tell from the look he had that he couldn't
find the heartbeat. The MD then came to discuss it with me later.

The next pg all my u/s were donw by the OB in her office, so she
discussed it as she was doing it.