Possible duplex kidney at 32 week ultrasound...

[Katie]

Hi all,

I haven't posted in a few months (was out of town working and didn't
have much Internet access). But now I'm back and catching up on
everything I missed while I was gone. Congrats to everyone who's
given birth over the summer and to those who've announced pregnancies,
too!

Anyway, the main reason I'm posting now is for some support, advice,
or whatever if anyone else has had experience with this....Sorry it's
a bit long-winded.

Back at my routine 18 week ultrasound in May, the doctor noticed that
one of my baby's kidneys was slightly enlarged (actually, the renal
pelvis - a condition called pyelectasis). Because this is considered
a soft marker for Down Syndrome, I went for a triple screen (which I
hadn't originally planned on having). The screen came back fine (e.g.
about 1/5000 chance of DS, etc). It was recommended that I go for
another ultrasound later in the pregnancy to monitor the situation
(which apparently usually clears up on its own).

So, I went for my follow-up ultrasound today (32 weeks, 4 days) and it
turns out that the baby's left kidney is not draining properly. One
of the explanations is that it is duplex (e.g. two chambers) and that
the lower chamber (the one closer to the bladder) is blocked or not
connected to the bladder properly. Another possibility is that there
are cysts blocking the drainage. The doctor said they'll be examining
the pictures more and DH and I have to meet with specialists in a
couple of days. He also said that after the baby's born, it'll have
to be on antibiotics right away to prevent infection from reflux and
then will have to go for an ultrasound to determine exactly what the
problem is. Ultimately, it will probably require surgery of some
sort.

I'm just feeling a bit frustrated right now because I really don't
feel like I know what it all means. The doc said that this increases
the chance that the baby has Down's, but not by a lot (e.g. now the
chance is probably 1/3500) but it's also not out of the question. The
u/s technician was very reassuring and quite nice while the doctor
seemed a bit more alarmist, so I really don't know what to think.

Anyway, if anyone else has experienced this, I'd love to hear about
it. I did a google search for other posts about this (e.g. "duplex
kidney", "double kidney", etc. but didn't turn up much - there were
quite a few posts about pyelectasis, though).

On the upside, we got some great u/s pictures of the baby! Normally
here in British Columbia, pregnant women are only sent for one routine
ultrasound (at about 18 weeks), so while I'd much rather have had that
one turn out normal and not had to go for another, at least DH and I
got to see the baby at 32 weeks (and saw that, reassuringly, it's head
down, and that everything else about it is perfectly normal - e.g.
other measurements, etc.).

Thanks for letting me vent. I feel a bit better just having written
this.

Katie
#1 EDD Nov 1/03

[Em]

"Katie" > wrote in message
<snip>
> Anyway, if anyone else has experienced this, I'd love to hear about
> it. I did a google search for other posts about this (e.g. "duplex
> kidney", "double kidney", etc. but didn't turn up much - there were
> quite a few posts about pyelectasis, though).
>
> On the upside, we got some great u/s pictures of the baby! Normally
> here in British Columbia, pregnant women are only sent for one routine
> ultrasound (at about 18 weeks), so while I'd much rather have had that
> one turn out normal and not had to go for another, at least DH and I
> got to see the baby at 32 weeks (and saw that, reassuringly, it's head
> down, and that everything else about it is perfectly normal - e.g.
> other measurements, etc.).

I don't have any experience with this, but I did want to wish you well. I
hope everything turns out fine--this must be fairly nerve-wracking for you!

(((hugs))) and tons of positive, healthy vibes to you.

--
Em
edd 9/23/03
(38 weeks today!)

[Katie]

On Mon, 08 Sep 2003 22:24:31 GMT, (Katie)
asserted:

<snip stuff about duplex kidney diagnosis>

>Thanks for letting me vent. I feel a bit better just having written
>this.
>
>Katie
>#1 EDD Nov 1/03

Thanks everyone for the kind words - it's much appreciated.

We had an appointment with a perinatologist today who had looked over
our u/s scans and we feel much better. He basically said all the same
stuff as the doctor yesterday but his attitude was much more
reassuring.

It looks like the baby does have a "duplex kidney" but that it's not
as bad a diagnosis as it seemed yesterday. One kidney is perfectly
fine, and half of the double kidney is also working fine. So after
birth it'll mean antibiotics and further monitoring for the baby, with
the possibility of surgery at some point. Apparently it's fully
fixable and not at all life threatening since it was detected before
birth. I'm going to follow your advice, Anita, and keep researching
as much as I can. The more I know about it all, the better and more
prepared I feel.

The best news, though, is that even though now I'm classified as "high
risk", I still get to retain my midwives as my primary caregivers and
the doctor assured me that the rest of the pregnancy and the delivery
shouldn't be affected at all. I'll just have to go for a couple more
ultrasounds to monitor things.

Anyway, YAY for this newsgroup. It's a great resource and place to
vent.

Katie
#1 EDD Nov 1/03 (32w4d)

[Kathy Cole]

On Wed, 10 Sep 2003 05:37:53 GMT, Irrational Number >
wrote:

> As an off-topic followup, I never blamed my perinatologist
> for the misdiagnosis. However, I had problems with his
> attitude. I wanted to copy down the name of the diagnosis
> and he asked why. I said I wanted to do research and he
> said he would advise me against it. He said there was too
> much misinformation on the internet, blah blah blah, advise
> patients not to do too much research.

Ouch. My mother's surgeon also was concerned about web searches when I
mentioned I'd be doing research about her cancer, but calmed right down
when I started rattling off the CDC and related sites as where I'd
start.

[Em]

"Katie" > wrote in message
> Thanks everyone for the kind words - it's much appreciated.
>
> We had an appointment with a perinatologist today who had looked over
> our u/s scans and we feel much better. He basically said all the same
> stuff as the doctor yesterday but his attitude was much more
> reassuring.
>
> It looks like the baby does have a "duplex kidney" but that it's not
> as bad a diagnosis as it seemed yesterday. One kidney is perfectly
> fine, and half of the double kidney is also working fine. So after
> birth it'll mean antibiotics and further monitoring for the baby, with
> the possibility of surgery at some point. Apparently it's fully
> fixable and not at all life threatening since it was detected before
> birth. I'm going to follow your advice, Anita, and keep researching
> as much as I can. The more I know about it all, the better and more
> prepared I feel.

It sounds like things are going to turn out fine--maybe a little bit of
extra stress/worry, but definitely something you can handle! Information is
very powerful--keep up the research.

> The best news, though, is that even though now I'm classified as "high
> risk", I still get to retain my midwives as my primary caregivers and
> the doctor assured me that the rest of the pregnancy and the delivery
> shouldn't be affected at all. I'll just have to go for a couple more
> ultrasounds to monitor things.

This is *wonderful* news! I'm so happy for you!

Best wishes with the rest of the pregnancy and with your little pumpkin :-)

--
Em
edd 9/23/03
(38w1d)

[Irrational Number]

Em wrote:
> "Irrational Number" > wrote in message
>
>>As an off-topic followup, I never blamed my perinatologist
>>for the misdiagnosis. However, I had problems with his
>>attitude. I wanted to copy down the name of the diagnosis
>>and he asked why. I said I wanted to do research and he
>>said he would advise me against it. He said there was too
>>much misinformation on the internet, blah blah blah, advise
>>patients not to do too much research.
>>
>>Like... right! He's going to give me a diagnosis, mention
>>termination in the same sentence (I was at 24 weeks!), then
>>NOT LET ME COPY THE NAME OF THE PROBLEM SO I WOULD NOT DO
>>RESEARCH??? Had I not been a sniveling mess, I would have
>>yelled at him.
>
> <snip>
>
> Wow, Anita. What a nerve-wracking experience for you. Things are going well
> with Pillbug now though, after all of that?

Things are totally fine now. After diagnosing Pillbug
at 24 weeks with Agenesis of the Corpus Callosum, possible
neuronal cell migration problem, and enlarged brain
ventricles, the fetal MRI eliminated the ACC and cell
migration problem, so the only remaining one was enlarged
ventricles.

At birth, the CT scan showed normal ventricle sizes, so
we were all clear. There was a lot of other drama with
the on-call neonatologist regarding my CMV results,
Pillbug had respiratory problems and was put in the
oxygen tank, and also an infection so he got antibiotics.

Still, he was 9.5 lbs. at birth, and my OB said, no
wonder his ventricles were big, he's a big baby with
a BIG HEAD.

To get back partially on topic, our web research turned
up some good results. We found lots of brain MRI images
that helped me visualize the problem and found a support
group that had concrete data we needed. I'm just
thankful for having a husband who felt exactly as I did
that we were going to do whatever was necessary to find
out about the problem and for having an OB who was willing
to do whatever I wanted him to do to get me information.

> On the other extreme, I once counseled a family through my volunteer work
> that came to me with a one word diagnosis of a *very* rare condition written
> down on a scrap of paper and said, "the doctor says our newborn has this. He
> told us to go look it up on the internet. Do you have internet here and can
> you help us?" This family had *never* used a computer before and had no idea
> where to begin. They had no further information than what was written on the
> paper and a little sketch of what deformity to expect. They had also *not*
> been told that there was a specialist for the condition in the very town in
> which they live (I just so happened to know the name and other info for the
> specialist from my work with other families, but if they hadn't happened to
> come in during my shift, who knows when they would have found him). I was
> completely stunned and dismayed.

Good for you! I'm so glad that family found you!

For Katie: I know the kind of hell you go through
when you get a bad diagnosis. Just arm yourself
with information and push through the problem. We
were looking into increasing our life insurance,
me quitting work to take care of Pillbug (ACC comes
with seizures and other such stuff), whatever we
could do to take care of our baby. Gosh, just
writing about this brings all the feelings back.
There were lots of tears, and now I'm so thankful
that we did what we did. I savour every day with
Pillbug.

-- Anita --
Mommy to Pillbug, almost 3 months

--
SUCCESS FOUR FLIGHTS THURSDAY MORNING ALL AGAINST
TWENTY ONE MILE WIND STARTED FROM LEVEL WITH ENGINE
POWER ALONE AVERAGE SPEED THROUGH AIR THIRTY ONE
MILES LONGEST 57 SECONDS INFORM PRESS HOME CHRISTMAS.

[Katie]

On Wed, 10 Sep 2003 15:46:54 GMT, Irrational Number
> asserted:
<snip>
>For Katie: I know the kind of hell you go through
>when you get a bad diagnosis. Just arm yourself
>with information and push through the problem. We
>were looking into increasing our life insurance,
>me quitting work to take care of Pillbug (ACC comes
>with seizures and other such stuff), whatever we
>could do to take care of our baby. Gosh, just
>writing about this brings all the feelings back.
>There were lots of tears, and now I'm so thankful
>that we did what we did. I savour every day with
>Pillbug.
>
>-- Anita --
>Mommy to Pillbug, almost 3 months

Thanks, Anita. I'm so glad that things turned out alright for you and
for Pillbug.

And (in response to your other post about how your doctor suggested
you not do any research) all I can say is holy crap! What a horrible
attitude for a doctor to have! When I mentioned to the perinatologist
yesterday that I'd been doing some internet research, he said
"Great!". He also suggested that we set up an appointment with a
nephrologist sometime before the baby comes just so that we can get
more info on the condition and possibilities for after the baby's
born. His opinion was that the more we know ahead of time the better
off we'll all be and that it will be far less stressful than having to
face everything on top of having a newborn to care for, being
exhausted from labour, etc. I'm really happy with his approach to
this and it's making it much easier to deal with (plus hearing that
it's not life-threatening for the baby and that it's fixable).

Katie
#1 EDD Nov 1/03 (32w5d)

[Linz]

On Wed, 10 Sep 2003 18:13:18 GMT, (Katie)
wrote:

>Thanks, Em! And it does look like I've got a pumpkin stuffed under my
>shirt these days (I suppose that's fitting considering the baby's due
>around Halloween - haha).

Hah! We have the same due date, Katie, and just this week Bloke looked
at me and told me I'dneed to be careful or I'd be arrested for pumpkin
smuggling!

>Katie
>#1 EDD Nov 1/03 (32w5d)

--
EDD 1/11/03
32 weeks

[Irrational Number]

Katie wrote:
>
> And (in response to your other post about how your doctor suggested
> you not do any research) all I can say is holy crap! What a horrible
> attitude for a doctor to have! When I mentioned to the perinatologist
> yesterday that I'd been doing some internet research, he said
> "Great!". He also suggested that we set up an appointment with a
> nephrologist sometime before the baby comes just so that we can get
> more info on the condition and possibilities for after the baby's
> born. His opinion was that the more we know ahead of time the better
> off we'll all be and that it will be far less stressful than having to
> face everything on top of having a newborn to care for, being
> exhausted from labour, etc. I'm really happy with his approach to
> this and it's making it much easier to deal with (plus hearing that
> it's not life-threatening for the baby and that it's fixable).

Good for you! I'm so glad that your baby
will be okay (whatever interventions are
needed) and that you're actively doing all
you can. I'm wishing the best for you and
baby!

-- Anita --
--
SUCCESS FOUR FLIGHTS THURSDAY MORNING ALL AGAINST
TWENTY ONE MILE WIND STARTED FROM LEVEL WITH ENGINE
POWER ALONE AVERAGE SPEED THROUGH AIR THIRTY ONE
MILES LONGEST 57 SECONDS INFORM PRESS HOME CHRISTMAS.