20 week scan - more questions than answers

We've just had our 20 weeks scans - everything looked okay to our untrained
eye but the doctors and mid-wife couldn't rule out Spina Bifida.



As today is 20 weeks exactly we've been told it is too late to have an AFP
test and as we weren't given the choice of an AFP test (just told that the
20 weeks scan would sort things out) what should have been a joyful day has
instead left us more uncertain than ever before.



Please can somebody explain to us what the success rate of AFP testing for
Neural Defects is compared to a standard ultrasound, because frankly the
information we got from the hospital was tantamount to be being patted on
the head and sent off with a hearty 'Don't worry about it.'



This baby will born one way or another, but the only surprise we want at the
birth is the gender. I realise that no test is 100 percent but this level or
uncertainty is both terrifying and infuriating.



The U/S looked like the spine was okay, it ended in a point at the base and
joined the head as it should and didn't seem to miss any bones in between,
the heart has separated in to four chambers and the brain seems to be
forming correctly, legs, arms, hands and feet were all of the expected
number and state of development, the sizes were spot on for the term, with
the exception of the tummy which was a little bigger than normal, but
nothing to be worried about (we were told) the heartbeat is strong and the
little beggar was bouncing around like a balloon in hurricane.



As I said everything looked okay to us - but because the doctor was
noncommittal, even cryptic, without the AFP test we're now back to being
panicky first time parents.



help



Bob and Clare

"Robert Powell" wrote in message
...
We've just had our 20 weeks scans - everything looked okay to our
untrained
eye but the doctors and mid-wife couldn't rule out Spina Bifida.



As today is 20 weeks exactly we've been told it is too late to have an
AFP
test and as we weren't given the choice of an AFP test (just told that
the
20 weeks scan would sort things out) what should have been a joyful day
has
instead left us more uncertain than ever before.



Please can somebody explain to us what the success rate of AFP testing
for
Neural Defects is compared to a standard ultrasound, because frankly the
information we got from the hospital was tantamount to be being patted
on
the head and sent off with a hearty 'Don't worry about it.'



This baby will born one way or another, but the only surprise we want at
the
birth is the gender. I realise that no test is 100 percent but this
level or
uncertainty is both terrifying and infuriating.



The U/S looked like the spine was okay, it ended in a point at the base
and
joined the head as it should and didn't seem to miss any bones in
between,
the heart has separated in to four chambers and the brain seems to be
forming correctly, legs, arms, hands and feet were all of the expected
number and state of development, the sizes were spot on for the term,
with
the exception of the tummy which was a little bigger than normal, but
nothing to be worried about (we were told) the heartbeat is strong and
the
little beggar was bouncing around like a balloon in hurricane.



As I said everything looked okay to us - but because the doctor was
noncommittal, even cryptic, without the AFP test we're now back to being
panicky first time parents.



help



Bob and Clare

======================

If you are talking about an amniocentisis test to check the fluid to see
if the baby has spina bifida then I can tell you a little story and hope it
helps you out.

My mother was pregnant with her first child and had a scan and they said
that they could tell from the scan that my sister has spina bifida so it was
very noticeable.

When my mother got pregnant with me she had her scan and they said they
couldnt notice anything wrong with my spine which was greta but my mother
wanted to have the amniocentisis anyway and they did it and it cam back
clear so my mother and father were wrapped but we found out last year being
around my 21st birthday that I have spina bifida oculta which means spina
bifida is present but it is very minor that it doesnt cause any major
problems just a few back pains but no problems with walking etc.

I know there are two different stories here but I am merely trying to let
you know that it could be a very minor type of spina bifida like I have got.

But if I was you I would go for a second opinion, it is better to be
prepared for these kind of things and being stressed about it for the next
20 weeks cant be good for either of you.

Regards
Chanelle

Robert Powell wrote:
We've just had our 20 weeks scans - everything looked okay to our
untrained
eye but the doctors and mid-wife couldn't rule out Spina Bifida.

Just to echo Chanelle, I also have a friend who lived well into
adulthood with spina bifida, never knew she had it, lettered in
swimming and diving in high school, and has a masters degree in special
education. She's fine. Not everyone who has it turns out the way
you're thinking when you hear a doctor say, "it might be spina bifida."

www.sbaa.org has a lot of helpful information. I know it's easier said
than done, but try not to panic until you have a definite diagnosis.
You'll save yourselves a lot of worry.

Maybe you could schedule a second scan, just to have a second opinion?
Don't tell the second doctor anything about the first scan, either.
See what they say.

Keep us posted, and hang in there.

Amy

snip
Please can somebody explain to us what the success rate of AFP testing for
Neural Defects is compared to a standard ultrasound, because frankly the
information we got from the hospital was tantamount to be being patted on
the head and sent off with a hearty 'Don't worry about it.'
snip

If you are talking about an amniocentisis test to check the fluid to see
if the baby has spina bifida then I can tell you a little story and hope
it
helps you out.

My mother was pregnant with her first child and had a scan and they said
that they could tell from the scan that my sister has spina bifida so it
was
very noticeable.

When my mother got pregnant with me she had her scan and they said they
couldnt notice anything wrong with my spine which was greta but my mother
wanted to have the amniocentisis anyway and they did it and it cam back
clear so my mother and father were wrapped but we found out last year
being
around my 21st birthday that I have spina bifida oculta which means spina
bifida is present but it is very minor that it doesnt cause any major
problems just a few back pains but no problems with walking etc.

I know there are two different stories here but I am merely trying to let
you know that it could be a very minor type of spina bifida like I have
got.

But if I was you I would go for a second opinion, it is better to be
prepared for these kind of things and being stressed about it for the next
20 weeks cant be good for either of you.

Regards
Chanelle


Thanks Chanelle,

the AFP test isn't amnio - it's a blood test - after the Nuchal Translucancy
Test we'd ruled out amnio as too invasive and unnecessary.

Thank you for sharing your story, its reassuring if little bump does turn
out to have Spina Bifida and yes, we're going to go private for a second
opinion; but we'd still like to know what the difference between success
rates of U/S and AFP are.

Again thank you for your story and your feedback

Bob

Have you spoken with your OB about this? S/he presumably
will get the results from the radiologist, and can discuss
them with you.

Emily

"Robert Powell" wrote in message
...
snip
Please can somebody explain to us what the success rate of AFP testing
for
Neural Defects is compared to a standard ultrasound, because frankly the
information we got from the hospital was tantamount to be being patted
on
the head and sent off with a hearty 'Don't worry about it.'
snip

If you are talking about an amniocentisis test to check the fluid to
see
if the baby has spina bifida then I can tell you a little story and
hope
it
helps you out.

My mother was pregnant with her first child and had a scan and they
said
that they could tell from the scan that my sister has spina bifida so
it
was
very noticeable.

When my mother got pregnant with me she had her scan and they said
they
couldnt notice anything wrong with my spine which was greta but my
mother
wanted to have the amniocentisis anyway and they did it and it cam
back
clear so my mother and father were wrapped but we found out last year
being
around my 21st birthday that I have spina bifida oculta which means
spina
bifida is present but it is very minor that it doesnt cause any major
problems just a few back pains but no problems with walking etc.

I know there are two different stories here but I am merely trying to
let
you know that it could be a very minor type of spina bifida like I
have
got.

But if I was you I would go for a second opinion, it is better to be
prepared for these kind of things and being stressed about it for the
next
20 weeks cant be good for either of you.

Regards
Chanelle


Thanks Chanelle,

the AFP test isn't amnio - it's a blood test - after the Nuchal
Translucancy
Test we'd ruled out amnio as too invasive and unnecessary.

Thank you for sharing your story, its reassuring if little bump does
turn
out to have Spina Bifida and yes, we're going to go private for a second
opinion; but we'd still like to know what the difference between success
rates of U/S and AFP are.

Again thank you for your story and your feedback

Bob

=====================

No problems check out the website that amy posted, it may help you.

Glad to see your going for a second opinion, you could also try to go for
a 4D or 3D scan, do you have them there, sorry im from New Zealand and have
had a 4D scan done to check for spina bifida as they can see everything, it
si just like putting a camera inside your amniotic sac and taking a picture
of the baby. Might be a good option for you as it shows everything a lot
clearer. It is a little expensive but Im sure it will be worth it.

It is an amazing scan and I am having another one done at 32 weeks which
is next week. Please look into 4d scans they are very wrth while.

Robert Powell writes:

: As I said everything looked okay to us - but because the doctor was
: noncommittal, even cryptic, without the AFP test we're now back to being
: panicky first time parents.

IM(NS)HO, routine AFP is useful for absolutely nothing more than scare
mongering! The false positive rate is so high that you are often
advised to follow-up with more dangerous and invasive tests.

What if you were told that the chance of a problem was almost infintesimal,
but that you could test for it with a test that created a significant
danger to a perfectly healthy fetus. Well this is the sequence of
events you are inviting by over-reliance on pre-natal testing.

Relax and enjoy the pregnancy, pretty soon you will be sleep deprived!

Larry

"Emily" wrote in message
...
Have you spoken with your OB about this? S/he presumably
will get the results from the radiologist, and can discuss
them with you.

Emily

Different system here in the UK - you're taken from the radiologists
straight to a midwife and doctor. Unfortunately in this case instead of
talking to us, they talked down us and left us feeling very confused and
angry.

You know what I think I'm picking up Todd's blanket distrust doctors in this
field!

: As I said everything looked okay to us - but because the doctor was
: noncommittal, even cryptic, without the AFP test we're now back to being
: panicky first time parents.

IM(NS)HO, routine AFP is useful for absolutely nothing more than scare
mongering! The false positive rate is so high that you are often
advised to follow-up with more dangerous and invasive tests.

What if you were told that the chance of a problem was almost
infintesimal,
but that you could test for it with a test that created a significant
danger to a perfectly healthy fetus. Well this is the sequence of
events you are inviting by over-reliance on pre-natal testing.

Relax and enjoy the pregnancy, pretty soon you will be sleep deprived!

Larry

Larry

I hear what you're saying and I'm sure if this was our second pregnancy I'd
agree 100% with you, but not having enough information or experience of our
own is simply scary.

What the people you are supposed to trust - the medical staff - are at best
vague at worst deliberately evasive, you start to distrust your own common
sense. Without the numbers (the actual success/failure rates of both
utrasound and alpha-fetoprotein testing) we lack the logical basis to move
on emotionally.

Thank you for your own (NS)HO I wish I had enough knowledge to form one of
my own.

snip
No problems check out the website that amy posted, it may help you.

Glad to see your going for a second opinion, you could also try to go for
a 4D or 3D scan, do you have them there, sorry im from New Zealand and
have
had a 4D scan done to check for spina bifida as they can see everything,
it
si just like putting a camera inside your amniotic sac and taking a
picture
of the baby. Might be a good option for you as it shows everything a lot
clearer. It is a little expensive but Im sure it will be worth it.

It is an amazing scan and I am having another one done at 32 weeks which
is next week. Please look into 4d scans they are very wrth while.


Yep, we had the 4D scan for the NTT and we're heading back to the same place
for the second opinion.

Again thanks

Bob