Children born with one kidney (Kidney dyplastic)

[zoemelb]

Just found out that our LO will most like only have one functioning kidney. His left kidney shows having kidney dyplastic at 20 weeks scan - we are still to see the specialist for further diagnosis (I think mainly to rule out Down Syndrome risk) and identify the exact condition.

I have done some research it seems that he will have pretty normal life, except for lots of scanning at early age, UTI antibiotics and possibly minor operations to remove the bad kidney.
To reserve the good kidney however, we will probably watch out for his diet (healthy balance diet with low salt and low fat), minimum alcohol drinks, no smoking, avoid contact sport. And recommended for yearly urine and blood test.

We do worry that if it will affect LO's personality in anyway. We don't want to wrap him in cotton ball, and standing out in school activities (bullies etc.), but care for the other kidney is needed obviously.

I wonder if any other mumsnet parents have child/children born in similar condition. What is your experience? Do you worry about the risk of damaging the good kidney? Are there a lot of trips to doctors and hospital visits? Was it hard for him/her growing up, and any bullies from friends?

We have long decided to have only one kid, so his most likely donor will be only us so we are quite worry if he ever needs a kidney transplant.

Thanks

Evening, yes we have our 10 month old girl born with only one functioning kidney, found out 20 week scan also. She has had few ultrasounds to check working one , first at 6 weeks then again at 6 months, and also there was a issue with tubing from good kidney, but that is better now. They said she will have normal healthly life, just no contact sports like rugby which my husband is gutted about as wanted her to get into rugby but think he was more joking.

Mean morning 😁

My mum has this, she's 65 and in fabulous health.

I had severe kidney infections as a small child which atrophied one kidney and stopped it functioning. I was under Guys Hospital till my late teens and had annual tests but since then nothing and have made it to 50 without any complications. It was mentioned early on that I might need the useless kidney removed but nothing has ever been said since and as far as I know it’s not an issue. I seem to have functioned just fine with a solo kidney and have not done anything special to preserve it.

I have one lung rather than one kidney, and my parents didn't do anything differently to my brother. I rode horses, played netball, drank alcohol as a teen etc. I did have appointments and peak flow to do but that was it.

My friend has one kidney and is a keen rugby player.

I know it's a huge thing to find out but it's a manageable, semi-common condition. Congratulations on your pregnancy and merry Christmas. Hope all goes well for you and DC

My brother was born with one kidney. He had to have preventative antibiotics for a while (a really low dose for maybe a year or two?). In his case his remaining kidney grew larger and so his functioning is normal. He decided as a teenager to live his life as 'normal' and drinks etc. My mum felt quite strongly about no motorbikes but probably would have anyway. He played rugby a bit at school but never really got into it.

My mum discovered in her 50's she only has one kidney. This is apparently unrelated to my brother. She has become more health conscious in recent years but mainly due to other things.

I can understand it is a concern, as you are more at risk, but the risk of damaging a kidney is still fairly small. I hope all goes well for you.

Hi I was born with 1 functioning Kidney the other was there but just sitting doing not much I had it removed when I was 30 am now nearly 50, your baby can have a normal life maybe get yearly kidney function tests but that is it. Good luck with the rest of your pregnancy,

@chicken2015 Morning, Lovely to hear that your DD is going well. When we found out, it was a shock, but at least the other kidney is fine (fingers crossed that it will). We are still coping with it, I'm worried that LO is in any pain and if the other kidney somehow doesn't work well, but trying to stay positive since it is nothing we can do right now the doctor said, and stressing out doesn't help. My DH and I were discussing about football in particular before, both of us are not really into sport so if he's our child hopefully he wont be into contact sport anyway. But he will still be a boy and kid is always kid, we will see how things turn out.
@HavelockVetinari: did you your mum find out recently? or since she was born?
@Inforthelonghaul thanks for sharing. Did you find it affecting you in anyway? The doctor told us that the LO's bad kidney may shrink and absorbed by itself, if not depends on the case, he may need operations to remove (apparently the bad kidney can cause high blood pressure?).
@StylishMummy thanks for sharing. Merry Christmas to you too.

@BendingSpoons @Mrsjayy thank you for sharing. It's very encouraging. that so many people have only one kidney and are living fine. We were shock at first because we don't know anyone with only one kidney (my husband has kidney stone, and FIL has prorate issue but found out at much later age).

My nephew only has one but only found out at 20 years old when he got a bad UTI. He's lived a normal life, played sports etc. Follow dr's advice but don't go overboard and wrap your child in cotton wool.

My sister has this. She is in her 40’s with her own children. It affects neither her ability to drink alcohol nor her ability to play contact sport.

I do think you’re over-egging the “preserve the kidney” thing. For lots of reasons, I am the only person in my family with 2 functioning kidneys and I’ve not noticed any change in their eating / drinking / sporting habits.

You only need one kidney remember!

My son was born with just the one 4 years ago. A couple of tests in the first few months to check the one he has is functioning fine, it is, and haven’t given it a second thought. Hasn’t affected him at all. We were told if we suspect he has a urine/kidney infection to see the GP ASAP which we’ve always done but he’s never had a problem.

I only found out five years ago that I have only one functioning kidney. The other has been frazzled since birth. I never knew, so I led a normal life - playing football and hockey as a child, going horse riding until middle age, drinking alcohol. I only learned the truth after developing sepsis as the result of a blocked kidney stone in my good kidney. I was in ICU and it was touch-and-go. I'm very lucky to have had the right care at the right time but my working kidney is now damaged too.

Since that time, I religiously do all of the things that you mention - watch my salt and sugar intake, no alcohol, never smoked anyway, regular testing - and despite my reduced kidney function I'm fine and enjoy good health. I'm 63, so I really hope this helps to reassure you about your LO. It's very worrying for you but thank goodness you found out now and can take sensible steps to keep him healthy and safe. I wish I'd known much much earlier.

The one thing I would add to your list is to make sure your LO gets plenty of fluid and is never dehydrated. When he is old enough, drinking plenty of water is key in order to prevent UTIs...and kidney stones.

I send my best wishes to you for your LO, and season's greetings too.

I'm 36, was born with same condition as your ds. I had the useless gammy kidney removed when I was 25. My diet isn't the best, I love wine, and I played rugby at school. I have my kidney function tested once a year. It's always been fine.

@user1471582494 @PotteringAlong thanks that's what we are planning to do. I must admit I'm quite a worrier myself (my DH is must more sensible), hopefully I wont grow him to be a mama boy, and really must remind myself that he's still a boy and kid let's him have some fun.

@MonkeysStoleMyBanana thanks for sharing. Did your son 's bad kidney got removed? I would rather keep it just in case part of the kidney is still working, but I guess they will do lots of tests before deciding that the bad kidney is totally non functioning at all.

@SingingLily thanks for sharing your story, it's very reassuring!!! Will definitely watch out for fluid intake. We are so lucky that they can identify these abnormalities so early now in the scan. I do wonder if any of my family only has one kidney and we never know.

@hotstepper4 thanks for sharing. Would you mind to share why they decided to remove the gammy kidney at 25? Did it cause you any problems for not removing? Dr said if not removed it may cause high blood pressure (unless it just shrink by itself).

I decided to, as everytime I had a drink it hurt, and I love my wine 😂

Mum had one kidney from her early 30s - and ended up with just one badly functioning kidney!

She was absolutely fine and never needed dialysis. She was supposed to watch her diet (bananas, alcohol etc) but wasn’t 100% ‘good’ at that.

Her doctors said ‘that’s why you get 2...’

No it wasn’t removed. It was there as normal on the 20 week scan then at a late growth scan at 37 weeks they couldn’t find it, when he was born he was scanned again at 1 day old and they confirmed that it wasn’t there at all. From memory I think the specialist said that if it doesn’t develop properly the kidney all all the connecting parts just stop developing, I’m assuming it just breaks down in the body and disappears?! His remaining kidney was rescanned again and tested for function at 4 months and it was working fine, was signed off at this point with no further care needed.

My DB had one kidney removed in the first few weeks of his life. He is in his 50s and fine, led a completely 'normal' life, no limits.
I had one removed in my 40s as it was found it was non-functioning, discovered through a scan as I got many UTIs. I was told no extreme sports (just in case other one got damaged) and that's it. They didn't say anything about restricting diet or alcohol. I drink sensibly nowadays anyway, so it's not affected me at all. Once a year get bloods done at GP, that's it for aftercare.

Meant to also say, my mum only has one kidney because she was a live kidney donor. You wouldn’t know. Honestly, you can live life without restrictions just fine

@zoemelb as far as I know the kidney that doesn’t work shrunk and doesn’t do anything and the other one grew bigger to compensate. It’s truly never affected me in any way since my teens and fingers crossed never will. I’ve never altered my diet, drink alcohol if I want to and pregnancies haven’t changed anything. Better with two obviously but one seems to work just fine and hopefully it will be the same for your baby.

@hotstepper4 thanks. I didn't know that can be the side affect. Hopefully the LO isn't in pain as much.
@Lordfrontpaw why does she need to avoid bananas? Hope your mom will be fine and live a long life.
@MonkeysStoleMyBanana what test did they do to make sure their diagnose is correct after birth if you remember? I just worry that the bad kidney is diagnose wrong and it's maybe the case of hydronephrosis (swollen and blockage kidney) instead of Multicystic kidney and dint treat it on time.
@NeedToKnow101 @PotteringAlong thanks for sharing

Bananas = high in potassium and best limited if you’re on a renal diet. My dad didn’t need to stop eating them until he got to about 20% kidney function if I remember rightly though.

I have only one functioning kidney. I didn’t find out until I was 29. It hasn’t changed how I live my life at all! I still have the atrophic kidney, not had any need to remove it, and my overall kidney function is fine.
My great-aunt had the same thing and lived until she was 102 and very healthy until she was about 99, so I’m hopeful!!

One of my schoolfriends only had one kidney. She was amazingly sporty and I don't remember her not doing anything everyone else did. She ate everything and certainly did her fair share of drinking alcohol!

She's now in her 50s and I'm friends with her on FB. She is. very healthy and has an active life with lots of foreign travel.

I'm sure the doctors can reassure you about your baby but I know it must be very worrying.