Hydronephrosis experiences?

[Readytoburst]

My little bundle is being delivered by Elcs on tuesday. The 22 week scan showed s/he had severe hydronephrosis and I've been regularly scanned since including being referred to kings (who were horrid). Kings felt the most likely prognosis is kidney removal as the tissue is dying. I am fine with all this and know s/he will be fine.

What I'm not sure about is what will happen from birth. I have a neonatal alert in my file so know a paediatrician will be involved from the beginning. I also know they will start him/her on trimethoprime straight away. All I've had from the paed is a letter to say they will do scans for the first months then further testing.

Does anyone have experience of hydronephrosis? Will they scan the baby before we leave hospital? Also, if your baby had it, what sex did are they. Obviously, most cases are boys so I've been convinced for a long time I'm carrying a boy but now I'm not so sure!! (not that I care either way!)

My little man is 17 weeks and had a dilated kidney on 20 week scan which grew to 14mm for second scan at 32 weeks.

I had a paedratician at birth didn't say much but I did have to have an EMCS so might have been a bit hectic. He was put on trimethroprine (sp?) that night and remain on it now (once a day). He has had an ultrasound scan which he had at 3 weeks and the kidney had increased very slightly. He had a scan which involved inserting a catheter before christmas and a further test which involved a cannula being fitted and injecting dye into his body to follow it through the kidney bladder and into the nappy, this was attempted before christmas but after 7 attempts to get the cannula in they postponed it and it was done last Friday.
Have Consultant appointment on the 11th when we will get results.

Apart from that was told he would be monitored regularly.

Thank you - my baby's kidney started at 17mm and grew to 22mm. The tissue is also echogenic so not as hopeful. Was told about the test with dye where they will test function and if it's less than 15% they'll take it out.

It must be hard to watch them struggle to put a cannula in your tiny man's hand!

It wasn't nice.
I found that once he was was here and we had the first consultant appointment after his first ultrasound, they explained alot more, so hopefully you will get some answers at that appointment.
I was told if the kidney does have to be removed then it won't be done till he is older, however his case isn't as severe so not sure if that is the same for your little bundle.
If you are lucky like us all the tests have been carried out now and he is 4 months so it is done reasonably quickly, so not too much time worrying.

The paedratician that checks and gives the all clear for release referred him for the scan. So he was referred before we left.
I believe the paed at birth is there to check first wee but can't be certain.

Hope they are quick at getting you some answers and your little bundle is okay. Is it just the 1 kidney?

Yes, fortunately just the one kidney. Kings told me it was likely that the function test would be at about 6 weeks and if it was less than 15% they'd take it out at a couple of months. I guess it's all just a waiting game!

All 3 of my dds had this, identified at 20 weeks scan. DDs 1 & 2 identified as 'moderate', with dd1 increasing into the severe category by 35 wks. AB after birth, and bladder x-ray and cystiogram (?) at 10 weeks. Hydro resolved at 6 mths with no reason (ie, blockage or reflux identified). Oddly ds (dc 4) didn't have it at all!

That's some bad luck! Mine has been severe since that 22 week scan. I take it all of yours had normal kidney tissue on the scans?

Yes, all tests post-birth were normal (other than the hydro that persisted for 6 mths or so then gradually petered off). They said having it the 3 times was just co-oincidence but the last consultant I saw about it with dd3 thinks there may now be a 'hereditray link'...was fully expecting to find it with ds on 20 week scan, but he had a choroid plexus cyst instead...

Sorry, yes the kidneys (it was bilateral) were normal on scans during pregnancy. I think by the end one kidney was 20mm, the other 14mm.