RPD and boarderline nuchal fold, advice needed

[delilahhh]

Hi ladies, first post on here, and first baby.

If anyone has any words of wisdom, then I could use some support.
Basically, had my scan today at 21 weeks 2 days, and mostly everything was fine, except my baby boy has RPD or 'baggy kidneys' is also what they were refered to as. Basically, I was told this by itself wasn't too serious and usually goes away by itself, but if it doesn't, then my son will be more prone to water infections and it is also linked to babies with chromosonal problems like downs symdrome. So they measured my babys nuchal fold twice, and although they said he wasn't in the best position, the fold was measured at 6mm, which is boarderline and anything over 6mm would be considered to give the baby a higher risk of having down's.

This is my first pregnancy and I have to say, as rational as I'm trying to be, I'm no less than worried out of my mind!

At my previous scan, the sonographer dated my baby at just 11 weeks so my baby was too small and in a bad position again, and therefore she didn't measure the nuchal translucency then. At 16 weeks I had the blood test which gave me a low risk of having a 1 in 25000 chance of having a baby with a choromosonal abnormality. I'm also only 22 so still fairly young so was expecting to be low risk, and I know that these tests are not diagnostic so I should try not to worry too much. I'm waiting to hear back from my Fetal Medicine Unit about booking in for another scan, and hopefully everything will look ok then. I'm not sure whether I would go ahead for amniocentesis as even if I was high risk, I don't think I could bring myself to have a termination, and the procedure itself has a risk of miscarrying.
I rang a helpline and they said I can opt for a blood test to be sent off to America where they can test for down's, but it will cost me £600 that I do not have. My mind is frazzeld and although I doubt anything will be really wrong with my baby, I'm also not dealing with the news very well!

Any advice or help or shared experiences would be appreciated, thanks x

 

[Kat541]

If you aren't going to terminate, you don't need to know now. If your child has a more serious form of DS, then there will be other signs of it at the ultrasounds. Also, if you are not going to terminate, then I wouldn't do the amnio. It just seems so high-risk, and for what? I know the not knowing is torture, but is knowing worth the child dying for? Would you feel tortured if something did happen if you did the amnio?

 

[delilahhh]

Hi Kat541, I don't think i'd have the amnio but I guess you don't know until you're faced with the decision. I'm feeling a lot calmer now and trying to concentrate on destressing and being positive as it's still very unlikely that my baby has a major problem and me stressing out isn't going to be good for him. My appointment with consultant is sorted and I'm sure it will help put my mind to rest! Thanks for the reply!

 

[kit10grl]

You don't have to have your amnio early enough that its still a miscarriage risk. I had my amnio at 33 weeks. And while there is still a chance of membrane rupture (this then causes a miscarriage in a baby below 24 weeks ) it would cause early labour rather than a straight away miscarriage as baby would be viable and likely could deliver and be fine at that gestation.

We were told its not something they advertise they do as obviously there are a lot of moral issues in regards to late term terminations as you could still request a termination for medical reasons that late. It was discussed with us as we had been adamant from 12 weeks when we were first told of a possible issue that we would absolutely not have a termination. We eventually decided to have it as we had a lot of soft markers by that point and just wanted to have the info that it was or wasn't downs so we could do some reading prior to delivery and be ready.

All the best with whatever you decide to do

 

[delilahhh]

Hey ladies, update about scan if you want to read...

Had another scan with a consultant, she re-measured the nuchal fold a few times, and she got readings as low as 3.5mm and as high as 5.2mm depending on position of baby and the screenshot they measure when doing the scan. So at 22 weeks this fold measured was within 'normal' range. (just goes to show you how innaccurate those measurements are when in one sitting she gave me about 4 different readings of the nuchal fold) Also, although I've read that once you have one large reading youre chances are always higher for there to be a chromosonal problem and it doesnt matter if the reading is subsequently 'normal' again, I asked the consultant this and asked are majority of babies with downs still born with a large nuchal fold present and she said yes, so if my baby did have downs, he would still be more likely to continue to have a larger nuchal fold throughout pregnancy. She took a look at the images from previous scan and could see how baby had flexed his head back as well which could be responsible for the larger reading.

RPD was still present, but only mildly, fluid in the kidneys is meant to be below 7mm, anything above is classed as a dilation. So in one kidney he had fluid of about 7.5mm, and in the other it was 8mm. So it is only mild, anything above 9mm is considered 'moderate rpd' and anything above 10 is considered strong rpd. Through some research, ive also found that RPD is more prevelant in boys as well! All in all I'm feeling much more convinced that everything will be fine, even if the RPD is still present at birth, its nothing i cant handle, just means baby has to be put on antibiotics to ensure he doesnt get a kidney infection and it would just be something to keep an eye on as he grows up that hes likely to grow out of.
She also rechecked other measurements and took a good look at his heart and couldnt see any other problems, although she reminded me that women who have normal scans and normal blood tests, can still end up having a baby with a range of problems.

Got to go back at 30 weeks for a scan to see if RPD is still present, and if so, means when baby is born, and hes three days old (enough time for his system to have started functioning efficiently independently) he will have to have his own scan to see if its gone away.

She mentioned to me that technically my chances are more like 1 in 200 now just because 1 in 200 babies scanned with rpd are born with downs, and she informed me about amnio, and that if I was still worried that I could have the procedure to find out, but as previously mentioned, the chances are actually higher that I could miscarry than the chance there actually is a problem anyway so it's not a risk i am willing to take myself, although I definetley understand why women do it, as those few days of feeling lost in the unknown were terrifying. I asked her about harmony blood test and she said it will hopefully be offered in the UK in the next few years or another non-invasive procedure will be. Which is good news for future ladies!

I have to say though, she wasnt the most reassuring doctor and I felt as if she didnt really have time for me as the waiting room was packed, so as technically unprofessional that is, I guess it can also only mean that she didnt think i had anything to worry about otherwise she would have kept me around longer. Anyway, thanks for your messages and I'll let you know what happens when my little one is born, and even if he does have a health issue, I will try my best to be strong and handle it. Cant wait to meet my little boy however he comes out!
xxxx