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Has anyone's baby had a pyeloplasty for dilate dkidney and how was it?

(41 Posts)
Wildpoppy Sun 13-Feb-11 21:26:14

My 8wo dd needs one in the next few weeks so any advice or reassurance very much wanted. Thank you.

amyboo Mon 14-Feb-11 08:55:20

I didn't want your post to go unanswered. DS was scheduled to have this operation in early January when he would have been 9 months old, but at the last minute, a scan revealed that his massive dilation on his kidney (which had been 38mm) had shrunk to just 19mm. So, the operation has been postponed and we have to have another scan in mid March to see what's going on.

I guess with your DD the dilation must be quite big also, as I understand they don't intervene unless necessary? Did she already have the urine relux and kidney function tests? Thankfully, DS has got good kindery function and no reflux which is why they're happy to monitor it a bit longer...

I spoke with a doctor friend of mine about the operation, and she confirmed that it really is nothing to worry about. It's a fairly standard operation, and the recovery should be pretty quick. I imagine that, like I was, you're worrying insanely about the anaesthetic and scar and everything. So, I'll send you a virtual [hug]. Hope it goes OK.

Wildpoppy Mon 14-Feb-11 09:02:22

Thank you amyboo. That post is so nice it made me cry. Virtual hug appreciated.

Am pleased your son is doing well.

Dd has one good kidney and one severely dilated but she had the mag3 test and the kidney function is good so they want to operate asap to save it which is good news as if function was bad they would remove it.

Most of all I am worried about the anaesthetic i think.

amyboo Mon 14-Feb-11 09:46:24

Sounds just like DS. He has one good kidney and one that has been severely dilated since birth (picked up in an ante-natal scan). His kindey function is good, so they've been happy to monitor it every 6 weeks. We were only recommended surgery in early January because it was consistently 27mm, 30mm then 38mm. The consultant has basically said now that if it can stabilise under 20mm he will be happy to continue monitoring but if it increases again then they will want to operate.

Can they not monitor your DD for another few weeks to see what happens? As far as I understand it these dilations can often improve by themselves, especially if the kidney function is good.

I was worried about the anaethestic too. But my doctor friend (did a paediatrics rotation at Great Ormond Street) said that they're very safe these days, and it's a short procedure too which helps. Really feel for you with this - I was a mess about it and DS would have been 9 months. Can't imagine what it must be like for you when your DD is so young. Sending another virtual [hug]

thelittlestkiwi Mon 14-Feb-11 09:55:55

My DD is going through tests for this but she is a bit older at 20 months. They think she has an obstruction so want to do another test to plan the op. It's all taking a while and she seems fit and healthy in the meantime so we haven't been pushing for it to happen sooner.

It is terrifying though. It must be even harder with a much younger child so no wonder you are worried.

DD is old enough to really fight things like the catheter so we had to restrain her for the tests which was very hard. I'm not sure how we will manage if she has a drip as I can see her trying to rip it out.

Wildpoppy Mon 14-Feb-11 18:37:11

thank you - the surgeon said that the kidney was very stretched (30mm) and needed to be operated on asap to save it and maintain the good function and when I said what if we decided to wait she said then they would end up doing it in a month or two anyway because it would get infected and then they would not only be dong the op but doing it on a dangerously ill child and on a kidney that may not be saveable whereas now she is in good health so in best possible place for an op. So no choice really. Am very tearful though. Or perhaps that is tiredness.

thelittlestkiwi Mon 14-Feb-11 19:55:11

I felt the same when we found out DD needed an op and she was much older. It's the idea of someone cutting into your tiny wee baby. I'm less panicky now cos we've had a long time to get used to the idea and have a lot of other stuff going on.

I've also tried to reassure myself that this was a fixable problem. The worst case scenario is the op, which will fix it and DD will be good. Our GP told us one of his grand kids had been born without a lower intestinal tract or anus and had 70 ops before he was 1. He says the surgical team at our hospital in NZ are very good.

The situation still sucks, but best that they found it and can sort it.

Will you keep us updated? Will be thinking of you.

Wildpoppy Thu 17-Feb-11 19:14:00

i will thelittlestkiwi thank you .we actually had a pre o[ chat with the nurses on the ward and a surgeon and they were very nice and reassuring. Just waiting for a date now.

anicka1 Thu 05-Feb-15 09:45:50

Hi everyone, my 3 month old has been advised to have a nuclear test to determine whether or not she will need surgery. Im feeling a bit anxious and wondering whether the treatment really is 100% necessary. Amyboos post made me think twice if all of a sudden the kidney dilation just dropped that dramatically-is there not a chance that babies can outgrow these narrowings in the ureter? Do you think the doctors really give it enough of a chance if amyboo was advised for surgery and then all of a sudden postponed. Amy if you are still on this site could you give me a bit more information about your situation? Im sorry to bother you and I know it was a few years ago but there is not much information on the internet other then hospital fact sheets and of coarse they just say to do what ever your doctor says. Thanks

amylawrencexx Thu 25-Aug-16 16:32:18

I know this thread has not been posted on for a while now but just incase this answer is helpful to anyone..

My son had pyeloplasty in March 2016 at Great ormand street hospital he was 1 year 4 months old.

He was diagnosed with hydronephrosis in my womb when I was at one of the private 4D scans I booked. After telling my midwife they kept a check on his right kidney dilation. He has been on antibiotics since birch to stop any urine infections and had ongoing scans and tests every 3 months until he was 1. When he was 1 they did one last scan and nuclear test and he still had gross hydronephrosis so after speaking with Mr Mustaq he decided it was best for Jenson to have the pyeloplasty surgery. He was admitted on March 1st 2016, we had to bring him in that day and he had to stay minimum of 2 days. I took him down to theatre where I had to hold him while they put a gas mask over his face to put him to sleep (they said this was the easiest quickest way) it was horrible he went all floppy and heavy in my arms, they then layed him on the operating table and told me they would call me when he was in recovery for me to see him. It took about 2 hours and 15 minutes until I got that phone call, I went straight to recvoery where he was still in a deep sleep. They told me to wake him up so eventually after about 5 minutes of saying his name and touching him he woke up but was very drowsy they then took him back to the ward. He was in there for two nights and he just had painkillers. He also had a stent hanging out of his side as it had to drain urine for two days. The first day and night he was really drowsy and tired and just wanted cuddles which is expected after open surgery, the next morning he was the same and then he picked up and wanted to get out of bed and walk around and play. He made a quick recovery and was fine afterwards. One week later we had to go back and have his stent removed which was fine and although still visible his scar has heeled well. At the end of March we had another follow up scan which showed that the kidney dilation had not shrunk as much as we had hoped so we now have another appointment in September for a scan and to talk with Mr Mushtaq again to discuss the progress or lack of and what to do next. All in all he is a happy and very active little boy but he does wake in the night sometimes flinching to the side so I just have to comfort him and hope that he isnt in pain and await September to see what they have to say.

capricorn1913 Mon 17-Oct-16 21:38:27

To amylawerencexx

I hope your son is doing well.

Your post has been so helpful as there is so little information available on internet.

My little boy who is 10 months old also has an obstruction and we have been told he will need surgery. However, his dilation has always been consistent around 20mm and it hasn't got any better or worse but the consultant feels it will not get better own its own and surgery is the way forward. I am still in double mind as I am unsure if his dilation is severe enough to put him through the surgery or the success rate outweighs the risks. Would you mind sharing your little boy's dilation measurement and also the outcome of your follow up post operation meeting with your consultant?

Thank you and best wishes xxx

Melanie519 Wed 19-Oct-16 06:44:14

Dear amylawrencexx,

How was your check up result in September? Did he show improvements on his dilated kidney? I hope he is doing well!

My son had his pyeloplasty on Sept 05, 2016. We had done 4 ultra sounds follow up since then, all showing no improvements at all. In fact, his last scan showed that his dilation had increased from 2.4cm(pre-op) to 3cm(post op). His stent was removed next week and we are going back for another US next Thursday, I'm crossing all my fingers that the dilation goes down a bit.
Prayers and wishes to all those children out there who's having to go through all this at such a tender age.

capricorn1913 Wed 19-Oct-16 16:26:48

To melanie519

Thank you for your post. Did the consultant explained why your son's dilation has gone up and it is showing no improvement.

After reading your post I'm really not sure whether I should put my 10 month old baby through the surgery and no guarantee of it will get better. We were told that it will be atleast 3 months before the dilation would improve.

How old is your son and how did he cope with the surgery.. I'm really worried about the anaesthetic bit. I would really appreciate if you could kindly share your experience. I really hope your son feels better soon.

Best wishes xxx

Melanie519 Thu 20-Oct-16 03:44:25

Hi capricorn1913,

My son had his surgery when he was just 4 months old, he is coming to 6 months next week. Surgery wise, he recovered well physically and his wound dried up pretty fast. He was showing no signs of pain 3 days post op and so we stopped him on all the painkillers and only gave him antibiotics.

You're right, I read up many articles and most of them told me that we could expect to see some improvements only 3-6 months after surgery. But my consultant insisted that a series of US needed to be done, it was like going back to the hospital every two weeks for the scan and facing disappointment every single time. First 5 weeks of the US, he probably wanted to make sure that the stent was in place and didn't migrate. But now the stent has been removed(on 14 Oct, 2016), his next scan is on the 27th of Oct, by then it would be about 2 months after his surgery, so doctor is hoping that he would be able to see some improvements this time.

As per your concern about the worsening of the dilation, I did ask the doctor(before stent removal), he told me that the stent itself could be another cause of obstruction as the ureter itself is so narrow, plus putting in the stent would mean taking up a portion of the little opening and leaving even little of the passage for the urine to flow out. But when I read up online, all the articles told me that stent helps to drain the urine and not block the passage way so that left me very upset. On the day of stent removal, I managed to ask his assistant on what doctor meant by stent itself being another reason of obstruction and she explained that the two openings of the stent doesn't have valves so sometimes the urine can flow back up to the kidney instead of flowing down to the bladder and out from the urethra meaning that sometimes the pressure in the bladder could be higher and so it will force the urine up back to the kidney. This was what I understood. There's so many explanation from them, sometimes it makes me doubt them. I'm just keeping all my fingers and toes crossed that their assurance is based on facts and we will see improvements on his scan results soon.

I totally do understand how you feel. When our consultant told us that surgery would be needed, my mind went totally blank and I couldn't think or react at all. I didn't even get time like you to read up or ask fellow mummies whose lo had similar conditions and everything happened so fast. Surgery was performed within a week after our consultant advised for it since our priority was to protect his kidney function which is perfect now. Anyways I also read that normally in most cases hydronephrosis resolves itself on the first 18 months of life, so if your lo's dilation has been consistent and not increasing, you might want to consider to watch out and wait for a bit but also doing US on a regular basis to make sure it doesn't worsen. Who knows it might just resolve on its own one fine day?

Best wishes!

capricorn1913 Thu 20-Oct-16 21:39:10

To melanie519,

Thank you for getting back to me, I really appreciate your response. I really hope and wish that your son is on the road to recovery and you receive good news on the 27th Oct that things have improved. It is an extremely difficult time and it is really hard to go through all this when they are so little.

I know exactly what you mean by different explanations, you really have to pull information out of these consultants!

My consultant strongly feels that my son needs surgery as it hasn't got better by now, then it won't...however, I am in the process of arranging another scan prior to his surgery to see if his reading has come down or not.

Have you had any response from amylawerence? I would be really keen to know if her son's dilation has gone down as it has been 6 months since his surgery. Please keep me posted with the progress and I will do the same. Would you mind sharing with me which hospital your son is being treated?

Best wishes and take care xxx

Melanie519 Fri 21-Oct-16 03:26:13

Hi capricorn1913,

No, amylawrence hasn't replied till date, I am also waiting and hoping that her son has had some improvement on the dilation.

We are based in Singapore and my son had his surgery at the National University Hospital. What about you?

I just wanted to tell you that some things that is meant to happen will happen as God has pre-planned everything for each n every one of us. So just trust in him and cast all your fears to Him. I pray hard for the recovery of all our little ones. I also hope that your son's case could resolve on it own and you don't have to have him go through this surgery. Hugs to you mummy, we are all in this together so be strong!

Best wishes and keep in touch!

capricorn1913 Sat 22-Oct-16 21:03:36

To melanie519,

Really sorry for late reply, hugs to you as well. Like you say, I'm staying positive and hoping everything will be alright.

We live in the UK and our consultant is part of the National Health Service (NHS).

I will keep my fingers crossed for your son's results and really wish and pray it will be a positive outcome for you.

Best wishes and take care xxx

capricorn1913 Tue 01-Nov-16 18:29:14

To melanie519,

Hope you and your little one is doing well. How did the scan go? Xx

Melanie519 Mon 07-Nov-16 06:05:42

TO capricorn1913,

So sorry for the late reply.

My boy's last scan showed some improvement according to the surgeon, however the figure of ultrasound done by the radiologists doesn't say so. The surgeon say the US is variable and it all depends on the radiologist and the angle they take to measure. All in all, he didnt bother about the scary numbers, rather he said from the images, the dilation shows improvement and he seemed to be quite confident and has order another follow up on the 1 of Dec.

Well i do hope that the surgeon is correct and I shouldnt be too worried about the readings on the US report.

How's your lo? Did you go for a scan?

Take care.

capricorn1913 Tue 08-Nov-16 20:49:45

To Melanie519,

Hope you and the little one are doing well.

Good to hear that there is some improvement with your little one, I think we have to believe the surgeon they are the experts.

My son had his scan today and his dilation is same so I think we will have to go for surgery, it's scheduled in two weeks time, I'm really scared but hoping everything will be alright. I will keep you updated after the operation.

Also, it may help you I did ask our radiologist today about how the improvement is measured post-op and he did say that dilation measurement may remain the same after post-op but they look at how well the kidney is performing (clinical observation rather than scan measurement) and the surgery is to reduce the pressure on the kidney, he said think kidney is like a balloon even when it's deflated its floppy so therefore the dilation reading may always remain the same by measurement but kidney will perform better. Hope this helps you.

Take care and lots of hugs xxx

Melanie519 Wed 09-Nov-16 08:32:16

Hi capricorn1913 ,

Hugs to you and your lo. I know how you're feeling right now but do stay strong for your lo, he needs you the most.

As for the readings on the US scans, yes the dilation and the measurement will surely be consistently huge as the surgeon told me that some people take about 1-2years to slightly subside, but never expect it to look like a normal kidney. As for the kidney function, they told me normally the kidneys wont improve its function, it normally is stable or becomes worse. My last US report said that the thinning of cortex was noticed so I'm really worried. Our surgeon also told us that lo will need to go through another Mag3 test to rule out any obstruction. He's not so worried about the US readings but he's more concerned about the mag3 result. I really dread the Mag3 test, having to sedate my lo and putting him on IV which they never manage to get through the first try, the last time they only managed it after the 4th time and lo was screaming his lungs off by then. It was really heartbreaking. And the feeling of waiting for the mag3 results after the test is done, that's horrible.

Stay strong dear, I'll pray for your little one's speedy recovery. Leave it to God and he will see him through this.

Take care and keep in touch!

Melanie519 Fri 25-Nov-16 02:50:01

Hi capricorn1913 ,

How are you and your lo?
I really hope that the surgery went well and he is on the road to recovery.

capricorn1913 Fri 25-Nov-16 21:44:25

To melanie519,

Hope you all are doing well. The operation went well and he is doing good too, he bounced back much quicker than I imagined. I'm so relieved all went to plan and it's all done now. The next scan is being arranged for middle of December so I will let you know how it goes.

How's your baby boy doing? Have you got a date for mag3?

Thank you for all your support and messages it really helped me get through this. Lots of love and take care xxxx

capricorn1913 Fri 25-Nov-16 21:47:19

To Melanie519,

Just a quick question, how long did the urine was stained and was there any blood cots? Thank you xx

Melanie519 Mon 05-Dec-16 02:10:11

To capricorn1913,

it's great to hear that your son bounced back so quickly and doing well! I hope he recovers fully and soon shows improvement in all his subsequent scans.

We had an US scan done on the 1st of Dec which is like about 3 months from the date of surgery. Finally the dilation of about 3.1cm from the previous scan on his right kidney came down to about 1.5cm this time! We were so overwhelmed when we saw the results, after having putting in so much time and effort, finally we are witnessing some improvements! Of course, bravo to my son for being the one to fight so bravely all the while! Just couldn't thank God more for this! All fingers and toes crossed for further improvements on his condition. Our surgeon mentioned that if he continues to progress like this significantly, Mag3 scan will probably be ruled out. So we're are once again praying hard that his next scan on 2nd of March, will show more improvements!

Keep praying babe, and dont lose faith, God will guide us through this!

Take care and kp in touch!

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