Enlarged kidneys - neonatal scanning, what to expect?

[Twiga]

Am currently 25+2 wks pg. At 20 wk scan baby's kidneys showed up as at the larger end of normal and they recommended a re-scan which I had yesterday. Kidneys still showing up large - 95th centile and no conclusion in terms of what it may be/if we need to worry. Due to be re-scanned at 34 wks then they will scan baby at some point once they've arrived in June. Finding not knowing one way or other worse than being told a def neg/pos outcome. Am hoping someone can share some experience as to what happens regarding neonatal scanning, when it's likely to happen and what may need to be done depending on what they find. All in all this may not be anything at all at the end of the day but it would be nice to be prepared too. Thanks.

Where they talking about renal pelvic Dilatation? If so my ds had this in utero he was re scanned at 30 weeks and it was normal then again 6 weeks post birth and he was fine. If it remains the child will usually be put on low dose antibiotics for the first 3 or 4 years of his/her life to prevent urine infections caused by urine reflux and by this time they usually grow out of it. If they think the problem is acute enough they will do a tiny routine operation when they are babies to make the tube wider.

Ledodgy - They didn't name any condition that they suspected. In our case it may be a marker for Beckwith weiderman syndrome but there are no other markers showing so very likely to be that, thank goodness. They weren't able to rule out duplex systems etc. Seemed to say that shape and clarity on scan looked normal (in as far as they can tell from a scan), mainly the size that they seem worried about.

that should read - "unlikely" - sorry not overly with it today.

What does it say on your notes did they give you a measurement in mm?

Yup they did - lt kidney 39.1mm by 22.6mm, rt kidney 46mm by 21.8mm. Length at 26wks on 95th centile would be 36.9mm acc to txt book.

bump

Hmm you see I thin mine was measured differently so it may not be the same thing. If I were you i'd make an appointment with the consulant with any questions you have.

my ds had the same in utero, put as renal pelvic dilation on my notes - only enlarged on LHS, at 34 week scan still enlarged but 6 weeks post birth scan was fine and he was discharged (no problems since and he's now 10 mo) - he had antibiotics till that scan.

is there any more info on your notes? we were overlooked and not refered to a consultant (which was supposed to happen!) so make sure you question midwife if this hasn't happened to you - if you have consultant ask them all the questions

hth

DS2 had this and all was fine by the 6 weeks post birth scan. A friend's DS had this and needed an operation to correct a small kink in the outlet tube from the "problem" kidney which appears to have been a complete success.

DS2 had this. His kidneys still measure large (8m now), and he has had an operation to correct a kink (that was done at 6m). Sounds awful, but actually, we've had no problems whatsoever (touch wood ), and you wouldn't know that he had a problem at all. I am sure most cases of this resolve pre, or just post birth though. They will watch it very carefully. Got to dash now, but any questions, please ask

Twiga -no idea really but dh only has one kidney and it's a duplex and (so far, 31 years on!) it's absolutely fine. Hoping all goes well for you.

Message withdrawn

Thanks for all the replies, it's nice to know that it's prob nothing drastic and that can resolve by itself. Can't help but worry a little anyway but I guess that's natural.

Laura - the thought of any op sounds scarey, how long did it all take? Do they tend to do this type of surgery keyhole? Must have been difficult when he was so small too.

Megglevache - great to hear that things can still turn out to be normal after all the scans - like I've already said it's the not really knowing that's bothering me. Interesting that the prob is more common with boys.

Thanks everyone for sharing your experinces.

The op probably took about 3 hrs (including post-op waking up time). It was key-hole apparently - but he has a biggish scar IMO - about 4-5cm. Fading fast though, and will shrink as he grows. DS1 had already had two ops, which meant I was a bit more relaxed, and at least he won't remember it. The other tests he's had have been hard too, but they're 'over' once we leave the room in that he doesn't have any discomfort once they're over. DS2's condition is called duplex kidneys - he has 4 small linked kidneys, rather than 2 normal kidneys. The op was called a pyeloplasty (I think!). We're just waiting to get the test results to see if it was a success.

Laura - were they able to tell on the scans that the kidneys were duplex or did they just appear large. They've not ruled it out for our baby but apart from the large measurement, they're saying look normal in terms of shape and clarity on scan IYKWIM. If you don't mind me asking, what have the other tests involved? Hope that you get good results back from the op and he doesn't have to go through anything extra.

They knew on the 20w scan that something wasn't right with one of the kidneys. At the next scan (25w ish), they thought there might be a problem with both kidneys. They weren't sure exactly what the problem was. I had another couple of scans, and by the last one, they thought one kidney might be duplex, the other one just seemed a bit large.

When DS2 was born, they did a scan at about 2 days old, and they thought at that point that one might be duplex, the other just large. He was started on a very low dose of trimethoprim antibiotics (0.4ml a day to start with).

He had another scan a couple of weeks later, and two other tests. One was called a Micturating Cystourethrogram (MCUG) and involved putting a catheter up his willy, and inserting fluid into his bladder. This was to check if fluid was going backwards from his bladder to his kidneys. The other was called a nuclear medicine renal MAG3 renogram. This involved putting a cannula into his hand (or foot) to insert a radioactive dye into his bloodstream. They then watch under a scanner (had to keep him still, luckily he slept) as the dye goes through the kidneys and is passed out in the urine. The scan part took about half an hour.

The MCUG was the worst, as the catheter wasn't pleasant for him. The worst part of the MAG3 scan was the cannula when he was a baby, and then the cannula and keeping him still for the most recent scan (easier at 4w than 8m!).

I hope this hasn't scared you. We have been really lucky as DS2 hasn't had any kidney infections (even though he doesn't actually take the antibiotics as he has gastric refux so throws them up). Apart from the tests and the op, we haven't had any problems at all. Before the op his kidney function was 70/30, so one kidney was doing most of the work. They are hoping that removing the kink, will make that more 50/50, or even just maintain the 30% function in one kidney, rather than it getting any worse.

I found all this very stressful before the birth, as you don't really know what will happen. We were told that one kidney might not function at all, but that this wasn't the end of the world. Hence a kidney with even 30% function is better than nothing. After the birth, at least we knew what we were dealing with.

HTH a bit. This is a link to a thread I started about the tests.

Feel free to CAT me if you want to talk more further down the line

laura

could I just ask where in the country you are as our DS will I think need a pyeloplasty - and I don't know whether they'll do a keyhole one or actually cut him open.

Also how long was he in hospital, and what sort of pain was he in? DS is such a chirpy baby I can't believe anything is wrong but having seen the graph at the renogram one is obv badly blocked. The other is fine fortunately.

Just need some info to help me relax about it all...

Laura - thanks so much for sharing your experiece, it's much appreciated. May well take you up on your offer to CAT at a later point depending on what transpires at next scan etc. Like you've said it's always easier once you know what your dealing with - hate this waiting, just desparate to know that baby's ok and I've worried for nothing. Hope the outcome from your ds's op is a positive one .

kidneyprobs - just wanted to send you and your ds all the best, hope things aren't too stressful.

kidneyprobs - We live in Cornwall, but the op was done in Bristol Childrens Hospital, which is our closest children's hospital. The consultant from Bristol does clinics at our local hospital from time to time. He is called Guy Nicholls. We are shortly moving to Portsmouth, and will then be transferring to care under Southampton hospital as that is the closest specialist children's hospital for renal care.

He had the operation on Monday afternoon, and we went in on Monday lunchtime. We left on Thursday morning (although had we lived closer, we could have gone home Wednesday night). This was dependent on him coming off the morphine, and his drain being clear (he had a separate cut for the drain, but this has only left a scar the size of a chicken pox spot).

When he came round from the op, he had a continous morphine drip (and a fluid drip). He was also given paracetamol by suppository (only done rectally because he vomits oral paracetamol). He was definitely uncomfortable, but I don't think he was in large amounts of pain. He wasn't crying continuously or anything, and slept a lot. The morning after, I thought he was quite uncomfortable, so they turned the morphine levels up.

By the Wednesday evening he was sitting up and laughing again. As I said, he doesn't tolerate oral paracetamol, so after the Thursday morning, he didn't have any painkillers, and was fine.

Is your DS bf? If so, then be aware that they are quite dopey after the op. DS2 didn't feed properly for at least 12 hours, and then not as much as normal for at least 24-36 hours as he had a fluid drip. I needed to express milk as I was overflowing. The ward had fantastic pumps which I used, and I froze the milk and brought it back with me.

HTH, let me know if you've any other questions

Twiga - hope everything is clear by the time the baby arrives

he is breast fed (and that was one thing I thought about - sad isn't it!) - and I think the closest place would only be about 20 miles away so not really a problem. Hopefully be able to swing it on the private health care as well - see if there's a benefit with that.

I'm assuming your DS is okay now with no after effects of the op (apart from the scar of course) - was he more cuddly afterwards or has he taken it all in his stride?

The fact he needed morphine sounds quite worrying. Guess we'll just have to see how the consultation goes on monday. thanks again.

he is breast fed (and that was one thing I thought about - sad isn't it!) - and I think the closest place would only be about 20 miles away so not really a problem. Hopefully be able to swing it on the private health care as well - see if there's a benefit with that.

I'm assuming your DS is okay now with no after effects of the op (apart from the scar of course) - was he more cuddly afterwards or has he taken it all in his stride?

The fact he needed morphine sounds quite worrying. Guess we'll just have to see how the consultation goes on monday. thanks again.

laura

another question if I may - when your DS had the renogram, how bad was the result. Our DS has one perfectly fine kidney but the other does seem blocked (obv draining though as it does go down in size). Just don't know whether they'll leave it for a year or do it now...

Not sure about the private health care aspect - DS2 had to be cared for in the 'intensive care' area of the renal ward after the op due the the morphine etc, so I think I would have preferred him to be there, than in a private area. You might be able to claim money for having to be in hospital though - this is what I did when pg with DS1 (had pre-eclampsia, so claimed £150 a night that I spent in hospital).

DS2 hasn't had any after effects from the op at all really. I'd say from the Thursday onwards, he was fairly much back to normal. I was more careful with him than normal (didn't let DS1 hug him too much ), but that was just me.

I don't know how bad the renogram result was really. It's hard for them to tell. They can see that the function is split across the kidneys 70/30, but as both kidneys are duplex, they could both be underperforming anyway, so if the 30% kidney was compared to a perfect kidney, it might do even less of the work if that makes sense. DS2's op was done quickly as they were worried that the 30% kidney might be even more damaged by the 'kink' further on if they didn't rectify it quickly. They're not sure if the reduced function was because of the kink, or because it's generally a worse kidney than the other one. Hopefully it was just because of the kink, and the op will have helped things.

It's a hard call if you're given the option. It was easy to deal with DS2 with him being so small, and keep him quiet for a few days. DS1 had an operation, and was meant to be quiet and rest for a week.... he was jumping off the sofa the next day! But then there are greater risks from the anaesthetic with them being smaller. I think they heal faster the younger they are, but not sure what the difference is between one year and two years, as opposed to one year and eight years old.

Something else which might have been needed after the op was a stent. This is fitted into the tube between the kidney and the bladder if the tube is really narrowed. It holds it open in case of swelling etc after the op. It is removed a month later under GA as day surgery. Luckily DS2's tube wasn't that narrow, so this wasn't needed. Might be worth asking about.