DownSyn Forum

mlbsnb · Posted: November 21 2002, 3:55 PM Post subject:

We were told that our baby (a boy) had pyelectasis of one kidney in his 18.5 week ultrasound. (A follow up level 2 ultrasound revealed no other "markers".) The doctors say this is a sign of down syndrome and that only amnio would rule out DS. We are not getting an amnio because we would not terminate and because we are afraid of the risks of miscarriage associated with amnio. I was just wondering if any of your children had pyelectasis and if this is really that common in Down syndrome children. The fear of the unknown is keeping both me and my husband awake at nights.
Thank you for your help and God Bless all Down Syndrome parents!

Tom · Posted: November 21 2002, 4:49 PM Post subject:

I was looking at one medical abstract, of 99 children identified in the womb with pyelectasis, 2 of them were born with chromosomal abnormalities (one had Down syndrome and the other had mosaic XYY). That represents an increased risk but obviously it is not a sure thing.

Here's a website to look at that suggests that the incidence of chromosomal abnormalities is 0.5% if there is no other structural malformation of the kidney.

http://www.wcox.com.au/minimal.htm

I wish you all the best!

Heidi · Posted: November 29 2002, 6:15 AM Post subject:

I have been thinking back-at my 20 week scan they detected a problem with one of Oliver's kidneys-something to do with the tubes that exit to the uretha?.....anyway, they checked them again at 36 weeks and they were still borderline. Noone ever mentioned at the time that this was an indicator (soft or otherwise) for DS-we had not had any of the other tests done though so maybe they did not connect the 2?

Oliver had to have a kidney scan at 3 months old, having had a mild antibiotic since birth, to prevent the small risk of a kidney infection-everything was OK and he has only had one infection since, at about 11 months old.

I have just had a chat with the consultant who did the scans (I work in the Maternity hospital where Olvier was born!)...the protocl here is that in a woman over 35 (which I was) and an indicator as above, an amnio would have been discussed, to rule out DS (we had already agreed this wasn't an option).

In isolation though, the kidney problem is not a good marker for DS...........

I hope this helps?

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Heidi

mlbsnb · Posted: December 02 2002, 1:15 PM Post subject: Thank you plus one more question

Thank you all for your responses.
Did all of you have the triple screen blood test and how old were you? Were any of you offered fetal echocardiagrams?

vonda · Posted: December 02 2002, 1:50 PM Post subject:

I did not have the triple screen test for a few reasons, mainly because it would have meant nothing to me cause I would have had the baby no matter what. But another reason is because when I was given the pamphlet to read over what the triple screen was beforehand, it said that a "positive" test didn't necessarily mean there would be something wrong with the baby, could be a FALSE positive, and that a "negative" test didn't necessarily mean that there WASN'T anything wrong with the baby, may be a FALSE negative. So my question was "WHY take the test then"? My sister had this test and it came back WAY off, and she was scared to death and her doctor pressured her into an amnio at the age of 28 years old. The baby didn't have a THING wrong with him and all this was done for nothing, but the amnio could have made her miscarry a perfectly healthy baby. So I guess you just have to make these decisions on your own, it's hard, but I just didn't see the point of this test. My feeling was that if anything was MAJORLY wrong with my child health wise, it would show up on sonogram. Vonda

Heidi · Posted: December 03 2002, 9:54 AM Post subject:

The triple test is offered over here, but as with all the tests other than the scans, we refused them. With Daniel, I was made to feel the only reason I would have been having an amnio would be to abort whatever they found. I am with Vonda on this one-anything that major would show up on the scan and unless my life was in danger, I wan't prepared to make that decision.

It is was not so obvious with Oliver why we were being offered the tests (even a nuchal test was available, for a fee!)....I suppose being over the magic age of 35, they tend to be more cautious. Even if I had known about Oliver, all it would have done would have been to put an unbearable worry on an already lousy pregnancy ( I WILL tell you all about it one-very gory though!!)

Not much help-as Vonda says, it is personal choice and you have to decide why you want the tests.

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Heidi

zebra · Posted: February 03 2003, 4:27 PM Post subject:

My first son had enlarged renal pelvis; the consultant called it an "assymetry" -- he turned out to not have Down's, although I did have so many extra scans & stress that I resolved to have virtually no screening at all in my next pregnancy.

Perhaps that will be reassuring to somebody...