Family Forum / Pregnancy / Pregnancy / August 2007

That sounds like a very messed up system. I have never worked in any
system that has dynamics like what you describe. Are you somewhere
other than the US by chance?

In my experience, what you describe is unusual, with nationalised health
care in the UK, even though there is variety from trust to trust
(healthcare in a given are is managed by a trust, though they do keep
restructuring and changing names!), within one trust, things should be
pretty consistent, so one example tells you how the whole trust does it
rather than that particular doctor or midwife and it really does seem to
be that routine 20ish week ultrasound is the 20-30 minute version, with
a longer or more specific one only carried out if any additional risk
factors present, so friends who had a baby with a more minor heart
defect that hadn't been picked up, then had an extra ultrasound overseen
by the relevant specialist.

I can only speak for one hospital in Korea, but that also seemed to be a
20-30min ultrasound, we did end up with one heading towards an hour and
only realised later this was as soft markers for downs were found so
they were checking everything very thoroughly, we knew something was
going on as a whole series of doctors were called in, who's
conversations we couldn't understand. I feel as if I should be angry we
weren't informed, but in many ways I'm glad that we weren't, we'd
decided against routine ultrasound, but ended up with some 2nd trimester
issues (turned out to be my kidneys) and thus had an ultrasound, had we
been confronted with the information, it would have really thrown us, as
it was info we'd never expected to have to deal with. As it was, they
took appropriate action from the finding of the soft markers and we
weren't worried.

Cheers
Anne

Ericka wrote:

For this pregnancy I have been seen at a military hospital.  For my "big"
ultrasound, I was sent to radiology where a tech spent about 45 minutes looking
at and measuring every single body part, including internal organs.  The
ultrasound was then reviewed by a radiologist and the results were sent to
the OB.  Anectdotally, I've not heard of someone having their OB actually
do the midtrimester screening themselves.

FWIW, I had the midtrimester screening done because I had declined all other
testing (nuchal fold, AFP/triple screen, etc).  I wouldn't have terminated
under any circumstances, but if there were physical abnormalities that could
interfere with a vaginal delivery I wanted to know.  I can't say what I would
have done if they had found soft markers for DS or other genetic problems.

When I was about 7-ish weeks pregnant I had an ultrasound due to possible
miscarriage, and that was done in the OB clinic by a PA, but just to look
for a heartbeat and measure the size.

--Jodi
34-ish weeks w/babe #1

P.S. Ericka, thank you for taking the time to comment on that other article
I posted (about induction lowering c/s rates).  I was offline for awhile
and when I came back it appeared that my newsreader had eaten the thread!
But luckily I had read your response and really appreciated your input

I agree that the realities are always more complicated than what we
think of ahead of time. I definitely do reject the oversimple "do
every test because that's what's best for the baby," or "more
information is always better," or "do all the tests and let the
professionals sort out what they mean: they know best." These are all
dangerous oversimplifications. Most people can adopt them and get away
with it, but every once in a while it could put them in a situation
they don't want to be.

What started me on this was an echo of another equally misleading
oversimplification, and one that is often repeated: "if you wouldn't
do an amnio or wouldn't terminate, there is no reason to do
screening." This is an equally dangerous oversimplification. And
again, in most cases, it's an oversimplification that you can get away
with. But every once in a while, it could put you in a situation where
you don't want to be.

It's never simple. Accepting a test is never simple. Declining a test
is never simple. These are always highly complex decisions with many
possible consequences. In most cases, mom and baby will both be fine
no matter what choices are made - so any discussion of testing or not
testing is always a discussion of rare unlikely events coming together
in complicated and often unforeseen ways.

One way to go at these decisions - not the best way, perhaps, and
certainly not the only way - is to consider what for you is the most
undesirable outcome and take that possibility off the table. Some of
my worst possible outcomes involve my baby dying in strangers' arms in
the midst of some invasive procedure because we don't know what's
going on and don't realize when it is time to say "quit." I have been
there when this happens, and it's bad enough as a provider. I don't
want to go anywhere near the parent end of this scenario. If my baby
has 25 minutes to live, I want to know that and make sure those 25
minutes are spent in the way that's best for my baby and my family.
That's what's important to me.

The original question was, "is there any reason to do this test, if
you wouldn't terminate?" I suggested some possibilities. I didn't say
"yes, for these reasons the test is mandatory and everyone should have
it." Instead, I said "here are some scenarios where it could make a
difference."

Whether we are considering scenarios where doing a test leads to some
undesirable situation, or those where declining a test leads to some
undesirable situation, it is up to the individual to determine which
of those scenarios is most meaningful (positively or negatively) to
them. Nor is relative incidence or likelihood the most salient factor,
because outcomes whether positive or negative do not all have equal
desirability or undesirability. If I wear my helmet every time I ride
my bike there is a 100% likelihood that I will experience helmet
related inconveniences, like getting my hair messed up. The chances
that I will have an accident such that my helmet saves my brain are by
comparison vanishingly remote. I'm still wearing my helmet, because to
me the inconvenices of wearing the helmet, though highly likely to
occur, are trivial compared to the consequences of a closed head
injury, however unlikely. It's not the relative likelihood of the
various outcomes, it's how I personally weigh the value of the
outcomes.

So, no, I'm not advocating that everyone should have first trimester
screening. It's far too much a complex and individual decision for
that.

Nor should anyone else suggest "if you wouldn't terminate, there's no
reason to screen." It's far too much a complex and individual decision
for that, too.

I think it's not necessarily a case of "can" be discovered, more whether
routinely discovered or not, there are a whole host of things that are
only revealed on ultrasound a certain percentage of the time.

I have a friend who's first baby had a valve narrowed in the heart, not
discovered on ultrasound (though I've come across instances where the
same condition has been), no problems in labour, something picked up at
routine paediatrican check, must have been clear it was something as
tests were done instantly (the weekend before christmas), rather than
referred for later checking. Baby had surgery (access via blood vessel
in the leg, not open heart surgery) about 3mths old iirc and is now a
happy healthy 3.5yr old - she had no symptoms at all before surgery.
They have since had a 2nd baby and certainly gave the impression that
this problem could have been found and they were referred for more
detailed heart ultrasound, which came back clear.

Obviously I'm not a doctor, but heart issues shortly after birth is just
not something I worry about - a babies heart is listened to so often,
that is might get through all those times and yet shortly after birth be
in such a state (purely due to a heart defect - rather than any event
occuring in labour) that location matters, must be vanishingly rare. The
one I worry about where choices would be important is a neural tube
defect where the lesion could be damaged in vaginal delivery, it may not
be entirely valid, but this would be the thing that would nag away at me
if I chose not to have ultrasounds and there was never an indication to
have one (last time around, I'd chosen not to, was out of the country
anyway, but ended up with several due to kidney problems in the 2nd
trimester).

Cheers
Anne

There are a lot of variables involved. One of them is the site of
delivery. I have personally been involved in the care with three
newborns who had unexpected critical heart defects. All survived.
However, all were delivered at Level III perinatal centers. I don't
know what would have happened if they'd been home births or delivered
at community hospitals.

Another variable is the defect itself. Transposition of the great
vessels and other outflow abnormalities are very unlikely to be
detected on a routine midtrimester scan. Thankfully these are very
rare in the general population. But remember, in this scenario we are
not talking about the general population. We are talking about a
scenario where we have a diagnosis of trisomy 21 that is known
beforehand. Heart defects of all kinds, including ones that are
difficult to detect, are much more common in aneuploid fetuses.

Also, the ability of an aneuploid fetus to survive suboptimal
uninformed initial care, and transfer to an higher level facility, may
be less than that of a newborn with an isolated heart defect (ie;
otherwise healthy newborn).

In summary, I believe my original point still holds: if you have an
aneuploid fetus and you want that baby to survive, it would be
advisable to have specialized heart studies prior to birth.

Watch out for this mistake - it is an easy trap to fall in to. For
instance, we often hear - correctly - that in the general population
fetal heart monitoring does not improve outcomes. However, if we are
talking about a fetus with severe growth restriction and
oligohydramnios in a mother with chronic hypertensiona and pre-
eclampsia, it is not appropriate to say "but there's no proven benefit
to fetal monitoring!"

Well, just as an anecdotal data point, we had a friend who had what I
recall as a relatively normal 18 week scan, but was reading large for
dates later and had another scan, to discover the baby had DiGeorge
syndrome (same chromosome pair affected as Down's, but with a chromosome
deletion rather than a third one).  They also found malformations in his
heart and lungs, and he did need mechanical assistance to breath, eat,
and some other interventions when he was born.  He also had heart
surgery when he was a few days old.  This was some years ago.

Michelle
Flutist

You're probably right in terms of there being less likely to be
minutes rather than hours, but there are definitely heart defects that
aren't easily able to be picked up prenatally that can cause life-or-
death scenarios when they are detected after birth.  I'm thinking
specifically here of any condition that stop blood returning to the
heart from the lungs - not necessary circulation before birth,
extremely necessary after birth.

There are also cases like my second son who had multiple heart defects
which camouflaged each other in the early stages.  He had tricuspid
atresia (completely missing tricuspid valve) and transposition of the
great arteries.  The transposed arteries meant that his right
ventricle was getting enough blood through his VSD initially so that
his heart was not asymmetrical until around the 30-ish week mark.  I
had an ultrasound at 28 weeks because the midwife was concerned about
IUGR but nothing was noted at that point with respect to his heart.
It was sheer coincidence that a minor car accident led me to have a
late ultrasound to check the placenta, at which point the fact that
his right ventricle was undersized had me sent off to a cardiologist.
If he had been born without diagnosis he would have been pink at birth
(his apgars were 8 and 8) but become blue within a very short time and
possibly had more problems than he did.  His prenatal diagnosis meant
that he was born with the cardiologist on standby and had his first
surgery to stabilise his condition at 4 hours old.

Cheryl

(Re: late amnios)

Yes, that's about what I was thinking - not so much that it would be a
good alternative on a widespread basis, but that perhaps this is
something that medical staff should be willing to consider as an option
that may suit some people.

All the best,

Sarah