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Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Help with Posterior Uretheral Valve (PUV)

10 replies

rowingmum · 03/06/2012 16:33

Hi, I was wondering if anyone can shed some light on this for me. At 19 weeks I had an Private anomaly scan. I was told all was fine. Five days later I had an NHS one in Bristol and told I had Mild renal dilation. I looked into it and it ends up it was actually moderate at 20 weeks. Ten days later I met with a fetal medicine dr (ends up he was the one who did the first scan) and he confirmed that it was mild renal dilation and not to worry and that he would see me at 28 weeks. I was also seeing a consultant obstetrician and at 25 weeks I noticed that the dilation was increasing. Not happy with the situation I went to London and the fetal medicine Dr. felt very strongly it was PUV. At the moment I have dilation of 22mm and 15mm with normal AF and kidneys. I am going back to London in ten days to be seen by another specialist at Kings. Can anyone please shed some light on this for me as I am terrified and feeling very unsure about things. Many thanks.

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deemented · 03/06/2012 16:38

Hi rowingmum,

What do you need to know? Ask as many questions as you have - it's really scary and worryng now, buti think you need a definitive diagnosis.

rowingmum · 03/06/2012 16:52

Hi deemedted,

Thank you so much for coming back to me. Do you have personal experience with this? Yes, I agree I need a definitive diagnosis but is that possible?

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deemented · 03/06/2012 20:06

Hi again,

Yes a definative diagnosis is absolutely possible. I do have personal experience of PUV, and sadly my experience doesn't have a happy ending - however, i had extenuating circumstances, and each case is different.

My baby boy, Ciaran was diagnosed in utero at 14 weeks gestation with PUV's. He was a twin, originally a triplet but we lost one at 10 weeks, and we were told it was unlikely he would live long after birth, if his heart didn't stop before then.

We were told that PUV's can occour anytime during pregnancy, although more often it occours after birth. Essentially PUV's is a little flap of skin that grows over the uretheral opening in the bladder meaning that urine cannot be passed through the bladder to be wee'd out.

In a child that has been born it's a really simple little operation, but obviously, it's more complex in utero.

How far along are you?

We noticed that there was a potential problem at our 12 week scan and it was initally thought that one baby had an umbilical hernia, but then a follow up scan showed the PUV's. We were then sent to Cardiff's Heath hospital for a more detailed scan and they gave us the prognosis. Basicly the earlier the PUV's are seen, the worse the outcome.

The main issues are with baby's kidneys/renal functions and lungs. From about 18/20 weeks babies start to make their own amniotic fluid which is drunk and then passed through, kind of like a continuous circle. They do this to practice breathing and to help their lungs mature fully. In a PUV's baby, they cannot pass urine, so they cannot practice breathing, so their lungs can't mature.

The urine they can produce backs up into their kidneys and causes damage.

We were told that if, by some miricle, Ciaran's lungs were mature enough for him to breathe, then he would need a double kidney transplant by the time he was two.

We were sent from Cardiff to St Michaels in Bristol - is that were you went? - and we were told there was a proceedure that could be performed on Ciaran to possibly help him. It involved inserting a needle through me, into his bladder and syphoning the urine off. This though would have to then be done every five to seven days for the rest of the pregnancy. At that point i was 22 weeks pregnant. We were told that there was a 75% chance of total miscarraige every time this proceedure was done, and given that we also had another baby to think of, we felt that this wasn't a viable option for us - but it may be worth asking about for you?

My boys were born at 28weeks and four days, and Ciaran lived for just under two hours. He died peacefully in his daddys arms. We declined a postmortem as we already knew what was wrong with him.

My story doesn't have a happy ending - but that absolutely doesn't mean that yours can't!

Normal kindeys at the moment is a very good thing, for sure Smile

There's a Yahoo PUV's group that i used to belong to thats full of great advice and support - maybe worth a look at? Also feel free to ask any questions you may have - i'm happy to help if i can x

rowingmum · 03/06/2012 20:44

Hi,

I am so sorry about your journey but I hope your other baby is doing well. No I was originally at Southmead (the other Bristol Hospital) and they said that it was no big deal and not to worry etc I was dilated at 10mm they said but went I went to London on Friday the Dr said the dilation was actually higher. I am now 22mm on one kidney and 15mm on the other. I was told that there is still AF and no damage to the kidneys seen yet, just severe dilation and most likely PUV obstruction as each scan the dilation is bigger and bigger. I just don't know how big they can get before severe damage occurs etc. The dr in London mentioned someone at St Michael's to me but I forget their name. Do you remember the name of your Dr. It all seems like a blurr really. I am going back to London on the 11th to see someone called Dr Nicholidies? Hopefully he will be able to answer some questions but In the meantime I am just a mess. I found the Yahoo group (I think) but it is really just full of advertisements.

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deemented · 03/06/2012 20:58

Dr Nicholidies is the best fetal medicine doctor in the country - seriously, you could not be in better hands than his - please take some comfort in that.

I'm afraid i can't remember the name of the Dr in Bristol - it's eight years ago now and as you can imagine, it was a pretty fraught time.

It's been a while since i was on the yahoo group, i'm sorry.

I can magine it all seems like a blur - it's a lot to take in and deal with. How far gone are you? It might help to make a list of questions you want to ask,i always forget so find writing things down helpful. Have you a name for your little boy yet?

Oh, also be aware that if you have any future pregnancies, having a PUV baby increases the chances of having a baby with kidney/renal issues, but i've gone on to have three more children since then who have been fine - and yes, my eldest lad is great, almost eight now and utterly fantasic.

I really hope everything goes well for you - please let me know, and if you ever want to chat/talk to someone whos been there, just shout Smile

rowingmum · 03/06/2012 21:05

Hi yes I have heard he is good and I am lucky to have got an appointment with him. The Dr who I saw on Friday who works with him was lovely too. I felt she was straight tallking where at Southmead they told me to calm down and not be so paranoid that the dilation would disappear etc, but I pressed on and at least we are getting somewhere although not the result one would want. I think I am angry about being fobbed off. I am currently 25 weeks but am worried that the condition is getting worse etc. Also, I live in Bristol and have another little girl to look after so don't really want to have to go to London for postnatal treatment but I will if need be.

Wow three more children!!!! I take it you are in Wales?

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deemented · 03/06/2012 21:09

Yep, i'm in Swansea Smile

They did mention to me at one point about early delivery - 32/34 weeks to stop more kidney damage, but tbh in our case it was that advanced it was pointless, and i never got that far anyway. May be worth bringing up though?

rowingmum · 03/06/2012 21:30

Hi my husband does quite a bit of work in Swansea.

Is it the dilation that causes the kidney damage? Can they tell inutero if there is much damage. I am so sorry to keep bugging you but I haven't been able process any of this yet and it is a real shock.

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deemented · 03/06/2012 22:30

You aren't bugging me at all, lovely - when we found out we literally had nobody to talk to about it as it was/is so rare - we felt totally on our own.

It's more the backup of urine that causes the damage, and causes dilation. Yes, they'll be able to tell in utero if theres any damage, but they'll be able to get a much better idea when baby is born and can scan kidneys and lungs etc then. It's more the two things that you have to deal with - firstly, are the lungs sufficeintly matured to be ok, and then what state are the kidneys in?

Of course it's a shock, it's bound to be - but please keep talking - we're here to listen x

rowingmum · 03/06/2012 23:26

Hi thanks again....

My measurements are quite severe from what I have have read. But at the scan on Friday I was told that no kidney damage could be seen yet however, that doesn't mean that there isn't any. Also the dilation just seems to be getting big so fast. Do you know of any other complications associated with this? I know it is a soft marker for Down's but I am going to have an amnio at 32 weeks to check for any other issues. From what I understand it is the AF that determines the lung development. So far, that it at a normal level. I don't really understand how since the dialation is so big. Do you ever hear about dilation sizes from other women?

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