Born with one kidney... Why? What next?

[Londonmum51]

Hi all,

I haven't posted on here before but was hoping for any advice, help or information that anyone could share.

In my husband's family there are a couple of people with kidney problems. All the drs say that they are not hereditary or genetic but as a number of them have exactly the same issue I nagged and nagged the dr to get an ultrasound for my 10 month old son. So we went last week and I felt a bit silly and like I was wasting their time but during the scan they could not find his right kidney. They told us that it is most likely it didn't develop properly although there were no issues at my 20 week scan. I am trying to research but all the info I can find is when they pick this up at the 20 week scan.

I am waiting for a referral to a specialist at the moment but am totally confused and worried. How can his kidney disappear? Or did they miss something at the 20 week scan? What does this mean for his future?

Anyone with any advice or experience of this? I would appreciate some help.

I'm sorry I can't answer the majority of your questions (hopefully someone will be along soon)

But your post caught my eye as DH has only one kidney. He's 50 next month and aside from having the annual flu injection, it has had zero affect on his lifestyle including diet, exercise and he has not been adverse to sinking more than a few a couple of pints

No direct experience. Dsis had a kind of reflux when she was a toddler. Lots if infections, one kidney removed when she was about 4.5. Follow up scan showed remaining kidney had doubled in size (they said to compensate).

She's had minor niggles over the years and has been advised to lay off the alcohol but is now happy and healthy in her 30's with 2 DCs.

DS only has one functioning kidney which was picked up at the 20 week scan. Unfortunately he had other serious conditions which overtook the kidney problems but, tbh, it has never been an issue.

As far as I can remember the docs told us that the non-functioning kidney would wither and either just stay there in a tiny way or just disappear . Mind you, like I said above, this has not been an issue and he is now a fine, healthy boy of 8.

I went to school with someone with one kidney. She had, and still has, a normal life, unaffected by it. Has two children now. I think she might have used the loo more often than some people, but apart from that nothing unusual.

Bit of info here

www.gosh.nhs.uk/medical-conditions/procedures-and-treatments/life-with-one-kidney/

AFAIK, you only need one kidney.

Friends dd had it picked up in utero that one kidney was just cystic and was removed shortly after birth, she has no problems what so ever and her one kidney functions very well.

It doesn't seem to be uncommon as such, very odd.

Fingers crossed that as your DS has not had any issues then he won't EVER x

I have (probably) only one decent kidney due to severe bladder reflux as a child - the only issue I have ever had is a nasty kidney infection while pregnant which was prob not related anyway but it has to be monitored. It should not affect him at all, but hugs to you anyway for a bit of a shock.

Thank you for so many quick responses. It does seem like it is one of those things that sounds worse than it is, I really hope I am right in saying that!

Electric - I don't understand how a kidney can disappear??? Glad to hear your son is well.

I never knew this was so common!

Married - they did say his left kidney is bigger than they would expect and appears to be functioning normally so it sounds like it is picking up the slack as it did for your dsis.

My 18mo DD only has one kidney.
One kidney was larger than the other at my 20 week scan and when she was born we had a whole host of scans and tests done and she was finally diagnosed with multicystic dysplastic kidney disease. Thankfully the affected kidney has shrunk and dissapeared.
She has preventative antibiotics every night (although she has never had a UTI) and we have been told to make sure she drinks plenty but otherwise she is fine and will live a normal life.

The doctor told me that kidney reflux tends to be genetic but not having one kidney, its just a birth defect that happens at around 8 weeks gestation. I am 40 weeks pg with DC2 and have had lots of extra scans but no kidney issues have been detected.

My 91 year old grandmother was born with one kidney - this was only diagnosed in her late 70's. She is generally ridiculously well but was recently admitted to hospital with a chest infection and dehydration - I saw her blood results and she basically still has normal kidney function.
I know of a fair few people who have donated a kidney as their child needed a transplant - having one kidney is so safe that doctors are willing to take one of your kidneys out to help someone else
So hopefully that answers 'what next?' - basically as long as the other kidney works normally your child will have a completely normal life with no problems whatsoever. There are loads of people walking around with one kidney who don't know it as they've never had a scan - your child has an advantage over these people as you know about the single kidney so you can let doctors know if your son ever has a wee infection or significant dehydration - if I knew a patient of mine had a single kidney I might have a slightly lower threshold for starting fluids if they weren't drinking and I may be a tiny bit more cautious about the doses of a handful of drugs (the only one I'd advise you to be careful of is ibuprofen (nurofen) - if your baby is poorly but drinking well then it's fine but if he's drinking less than usual avoid it and just stick to calpol - though to be fair I'd tell anyone that!) - but otherwise I'd not treat them any differently to anyone else.

As for why - no-one knows to be honest. Some kidney diseases are inherited, particularly polycystic kidneys. Often though, a kidney just not forming is one of those things, no-one really knows why and it's not due to anything anyone's done or inherited, just some little thing going wrong at that stage of development. It is probably worth seeing if you can get the 20 week scan reviewed to see if the kidney was there then or just not seen.

But basically, the most important thing is don't worry - you only need a little bit of one kidney to have completely normal kidney function and live a completely normal life - they whys and the hows and all that will be answered in your specialist appt but the what next is just carry on as normal as you have a healthy little baby with more than enough kidney, even if not quite as much as most other people!

My son has no identifiable right kidney (and was born that way)

As long as your son has one fully functioning kidney he will be fine, some people live their whole lives without ever knowing they only have one, or find out by chance.

It's been slightly different in my sons case as his remaining kidney was malformed, but your little one should be absolutely fine, and forewarned is forearmed so to speak. Best of luck, I know it's hard not to worry so I wont tell you not too :)

This place really is mine of information!! Thank you so much for sharing so much informatIon with me. I am feeling a bit less anxious now and so relieved that there is a massive consensus that it's fine. I think it was also shock.

I was stupidly relaxed about the scan because I was so sure it would be fine. That's taught me a lesson!

Again, thank you all, I am waiting for the gp to phone today so will hopefully get the specialist appointment quickly.

Will def avoid nurofen too.

My mom lived to 63yo with only one good kidney, only found out about it by accident. No issues.

My dd2 was born without her left hand. Sometimes these things happen for no known reason. About 60 children a year are born in the UK with some sort of limb loss and the vast majority there is no known reason, although a couple of theories.

She was for a time in a class with a little girl who had one kidney. I think she was born with one very tiny kidney and one normal one and the body reabsorbed the tiny kidney as it was nonfunctional. It didn't cause her any problems at all, but she did have scans occasionally to check on the other kidney.

I think its odd they didnt realise some level if problem at the 20 weeks scan.
My 14yo has deformed kidneys that were "too large" on my 20 week scan. From that she was whisked away at her birth and checked over and by the time she was 3 months old we knew exactly what was wrong with her and treatment started.

14 years on - neither kidney has or ever will work at 100% (well below that tbh)and will/have caused problems because of their deformities but - she is a normal 14yo, doing everything as well as (and sometimes better) than her 14yo school friends with 2 fully functioning kidneys.

She has had a few ops along the way and spent the 1st 7 years on prophylkactic anti biotics (to prevent infection) but is now medication free. We have annual check ups and are just awaiting the results of this years MAG 3 scan - fingers crossed all is continuing well.

I can reassure you that we have been told by Drs over the years people live normal lives on less than 1 kidney. My Grandfather had 1 1/2 kidneys removed in his 50's due to cancer and lived to 86 - and he died of nothing related to his kdneys 20 years ago - so you are talking 50/60 years ago his kidney and a half was removed - and medicine has moved on alot since then.

I'm surprised too, Soggy. DS1 has odd kidneys, one is larger than normal and one is much smaller than usual. That was picked up at 20 week scan, came under the label pyoestatis(?sp) and I had loads of extra monitoring (he is fine, btw, discharged soon after birth).

My DM is 74 and only has one kidney. She had the other one removed when she was 22 but as far as I know that one never functioned so the othre did all the work anyway. She has never had any health issues with it.

I was born with only one kidney, it was only picked up as a teenager when I had investigations for something else. Never caused me any problems, nor have I needed any extra medical care because of it.

My Mum was born with only one kidney, it wasn't discovered until she was in her 40's. It's caused her no problems, her one kidney is larger than usual to compensate and it seems to be doing a good job.

The only thing he will never be able to do is donate a kidney .

Really, don't worry. Finding somebody has something other than the standard 2-kidneys arrangement is quite often and unually picked up incidentaly during a scan for something else (my mum is 71 and only just found out that she has a 'horseshoe kidney' during an MRI scan for her back problems).

He should have normal kidney function (the way the kidney regulates both hydration levels and filters waste products 'out'/keeps good stuff 'in').

A kidney won't have disappeared but may well have become so atrophic and shrunk that it is not seen on a scan now, but was still visible at a 20 week scan. And of course mistakes get made too...

Depending what his further tests show, the may want to follow him up every year or so to keep an eye on his bloodpressure which may or may not be affected by having one kidney.

My DS2 was born at 31 weeks had a urine infection and extensive renal investigations because of that (he does have 2 kidneys). He is now almost 9, does of course not remember a thing about hospital visits when he was a baby and until he was about 3 and is fine.

It is such a learning curve when you are confronted with unexpected news like this - you'll be fine once you've got your head round it all .

My sister's boyfriend only has one kidney, he's 24 and it's had zero impact on his life and health so far. He was advised not to drink to excess but other than that no special lifestyle.

In my experience the 20 week scan can miss all sorts of things! My DS was born with a blockage from one of his kidneys and craniosynostosis (prematurely fused skull plates) neither of these were picked up at 20 weeks and we were very lucky I had a growth scan at 35 weeks where both problem were spotted. So it doesn't surprise me that things could have changed with your sons kidney between 20 weeks and birth.
As others have said he will be fine with one kidney so try not to worry too much (easier said than done I know!)

Another post to say I know someone with one kidney, she's 40, has 2 dc, never had any problems

Thank you OP for posting your question; we had a 32wk growth scan yesterday and it looks like our DC2 may only have one kidney (it wasn't picked up at 20wk scan so I wonder if it is a similar issue in that one has 'shrunk'/stopped growing at an early stage?). It's reassuring to know that a lot of people with only one kidney are able to live pretty normally.
Fingers crossed for your DS..