Enlarged Kidneys worse and worse at each ultrasound

[MrsHappy]

Post Uretheral Valve

Hi ladies
not sure where to start but i guess im just after some stories, experiences advice?

im pregnant with our first and we have known since 20 weeks that bubby (a boy) has enlarged kidneys, we are being very closely monitored and at another scan today we recieved even worse news that now both the kidneys and the ureters are severly enlarged (3times what they should be) they wanted to measurement to be 7mm and it was 23mm

so today we had a doctor talk so us about the fact that it is most probably a post urethral valve, kidney damage, immediate surgery, prenatal surgery (through my tummy) and they have referred us to a pediatric urologist.

i of course go home and google and its all so confusing and mainly medical documents so i guess im after any similar stories or recommendations or anything?.?
. We have our next appointment at the OB on tuesday and an appointment with the specialist in two weeks. i really dont want to wait that long so ill call on monday and go on a cancellation list! i just wanted bub to have an easy start to life but that is not going to happen now oh and im just over 30 weeks now.

[Pregnor]

I'm so sorry to hear your bub is having problems, i really have nothing but and i hope someone else has some answers for you. I hope they can get you in sooner

[Cat13]

No real help or advice, just . Very daunting to be preparing to bring any new person into the world without all the extra worry of medical complications.

My DS had an enlarged left kidney picked up on a late ultrasound when he was overdue. Not as extreme as what you are describing and only one kidney affected but that was worrying enough to us so I can only imagine how overwhelmed you are feeling at the moment. DS had surgery at 7months to remove a PUJ obstruction (an obstruction at the junction of the renal pelvis and ureter) by which time the kidney was functioning at about 10%. I was quite upset at that time to learn so much damage had been done as I thought all the regular monitoring up to that point was meant to ensure we acted before serious damage occured.

So I guess my only advice really is to do what you are doing and try and see the specialist asap to get a plan of action and don't be afraid to ask questions to make sure you are 100% aware of all the alternatives and possible outcomes. And don't spend too much time on google, you'll end up more stressed and confused.

Probably hard to look for positives but at least thanks to modern technology you are in a position where hopfully early detection means action can be taken to save as much kidney function as possible.

Best wishes

[MrsHappy]

Thanks for the support ladies

Cat how long ago was your sons surgery? And do you mind me asking what his kidney function is now?

[Mrs Awesome]

Hi there,

My son who is almost 2 years old was diagnosed at my 20 week ultrasound with dilated kidneys (left side worse). I can't remember the exact measurement now, but it remained unchanged for all of the scans we had leading up to his birth.

At a few weeks of age he had ultrasounds and dye tests to check on his kidneys and kidney function. His kidney function on the left was less than 30% and there was severe reflux on the left and moderate reflux on the right side. He was put on daily antibiotics which he remained on until almost 12 months of age.

He got his first UTI at 5.5 weeks of age and was hospitalised for a week on 3 different types of intravenous antibiotics. He ended up getting a UTI every 1-2 months for the first year of life and eventually we chose to have him circumcised, as we were told it would reduce the amount of UTI's he had. Since his circumcision, he has had no more infections and has been able to come off his antibiotics. At the same time as the circ they did a test called a cystoscopy, which showed that there was no obvious cause for his reflux/dilated kidney.

Scans done more recently show that the dilation is slowly decreasing, so they think that he will outgrow this eventually on his own. His kidney function is now 50:50. He will continue to see his Urologist until he is a teenager.

Where do you live OP? What hospital will you be going to?

[Misschief]

I have no advice, but just wanted to give you some hugs. I would be worried too. Will send prayers your way that you can get an appointment asap and that things will improve from now on

[Cat13]

Thanks for the support ladies

Cat how long ago was your sons surgery? And do you mind me asking what his kidney function is now?

DS's surgery was at 7months and he is now 4 so about 3.5 years ago....his most recent follow up scans were in November just gone and the differential kidney function is 37% left kidney 63% right kidney. Ideally this should be 50/50 and doesn't really tell you the function of the left kidney as such, more just that it's not as efficient as the right one. This is similar to the first scan after the surgery to remove the blockage and probably won't improve, the main thing is to make sure it isn't getting worse and no complications but he doesn't have to have another scan for 3 years now. And DS is absolutely fine, doesn't effect him at all and nothing we can do except make sure he stays well hydrated. Because DS's problem was caused by a blockage rather than reflux the risk of UTI was far less likely and he didn't have to go on antibiotics apart from after the surgery.

Hopefully you will have a better idea of the nature and extent of the problem once you've seen the specialist. If surgery is recommended either prenatal or after birth I know it's scary but these little bubbas can be such fighters and much tougher than we are sometimes xx