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Anterior Urethral Valves/ Megacystis at 12 - 14 wks - any experiences?

12 replies

RachAndFamousNot · 10/02/2008 15:38

At a scan at 12 weeks fetus was diagnosed with Megacystis - probably Anterior Urethral Valves. We should have another scan in a week or so so should know more but anyone know anything about this?

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justjules · 10/02/2008 19:35

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RachAndFamousNot · 10/02/2008 20:02

Thank you

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justjules · 11/02/2008 12:32

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Pitchounette · 11/02/2008 12:49

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justjules · 12/02/2008 09:16

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PetitFilou1 · 12/02/2008 09:36

Rach Sorry to hear that. Has the hospital doctor explained much about it to you?

RachAndFamousNot · 12/02/2008 12:35

Well at the scan it did appear that there was not much hope, because of the size of the bladder this would affect kidney function and therefore amniotic fluid, and therefore lung developmen and basically was not compatible with life.

However since then we've had another opinion that it MAY resolve itself - we will see how much amniotic fluid there is on Monday, so will have a better idea.

Thanks for your messages. Will keep you posted in case you're interested or helps anyone further down the line.

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PetitFilou1 · 12/02/2008 13:51

You poor thing. Good luck for Monday. I think the reason you've not had much response is that the diagnosis is so rare (having googled it). I wish you the best anyway

justjules · 12/02/2008 17:45

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panu123 · 04/06/2011 09:01

Hi, I also went for a 12+3 week scan and was told the baby has a megacystis. It is a rare malformation of the bladder between 10 ? 14 weeks where the bladder diameter is usually 7 mm or more. Usually diameter > 16mm falls into severe megacystis.
If the bladder diameter is between 7-15 mm then there is a risk of chromosomal defects, mainly trisomy 13 and 18, of about 25%. In this bladder diameter range and in absence of chromosomal defects, the megacystis will resolve in about 90% of the cases.
But if the diameter is > 16mm then the chances of chromosomal risk is 10% only but the chromosomally normal group had an increased risk of progressive Low Obstructive Uropathy. Case studies show that Progressive megacystis with Low Obstructive Uropathy had a bladder length of >16 mm and a diameter/CRL ratio >28 %.
Megacystis is also associated with other fetal abnormalities such as increased NT, which was observed in a case study in 75% of fetuses with chromosomal abnormalities. So your Dr most probably will ask you to do a CVS to rule that out.
There are treatments available like putting a shunt to let the urine pass into the amniotic fluid. But the chances of miscarriage is higher and success for such cases is not conclusive.
I am also very sad and don't know what to do. I have read there are cases where megacystis with > 25mm resolved itself and some babies with shuting treatment were born without any serious complications, so I am trying to stay positive. Hope you also feel better - just know God can work wonders so just pray and stay positive.

panu123 · 27/06/2011 17:50

Hi,

I got my scan done at 15+3 weeks again and the megacystis resolved itself! I am so grateful to God. The megacystis was >15mm, I think it was 16.2mm.
They gave me a 50 % chance of natural resolution. I pray for everyone who is going through the same situation and also can hear some good news.

clarey2311 · 05/07/2011 15:21

Panu123 I am so glad to read your post as it gives me some hope. Just had a scan at the John Radcliffe today and I was 2 weeks further along than I thought at 12 + 0 (due Jan 17 2012); my baby has megacystis measuring between 7-15mm. Done the Google thing and read the published literature, wish I was not a scientist with internet access is all I can say. I have had bloods taken and go back this Friday morning to find out the results. Very worried about the odds of Trisomy 13 and 18, just praying, like in your case, that it will resolve. I am so thankful that I have got this far, having had 2 previous miscarriages at 10 weeks and no baby to hold in my arms. I am 37. Let us know how you get on, I pray that all will be well.

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