Bad Kidney

[Samsmummy2011]

Hi my DS was diagnoised with and enlared left kidney and bladder at my 20 week scan, the docs could not give a proper diagnosise untill he was born as it could of been a number of things. T o cut a long story short he is now 3 months old and we have just had our appointment at BCH, ds has got reflux going up to his left kidney and as a result the kidney is not working at all so the docs have said it will have to be removed befor he is 12 months old. Obviously i am distraught at the thought of ds having to have any type of operation least of all being left with one kidney. (The right Kidney is working fine) Just wondered if anyone has any experience of this condition apparantly its very very common and only in boys??? and could offer any advice.

No experience of this one i'm afraid but bumping for you for the evening crowd.

I'm sure someone out there has come across this before.

Ds2 was investigated for reflux as one of his kidneys was found to be misshapen during an ultrasound at 6 weeks old. In his case he did not have reflux (although it was hypothesized he'd had it in utro hence the damage). As his function in that kidney is pretty good (if not as good as in his other) it was never suggested that it be removed.

So obviously my experience is not as serious as yours. What I learnt through my trip around the system is that yes reflux is common (it occurs not just in boys but girls too I think) but is usually treatable through a combination of prophylactic antibiotics and occasionally minor surgery. I'm sorry that's not the case with your son. I'm pretty sure I remember reading a post a while ago from someone whose daughter was due to have a kidney removed so hopefully they'll see this and be able to offer better support. Maybe try posting in children's health.

He will be fine with one kidney though - I realise that won't stop your worries over the next few months but hold onto that thought - you only need one.

At a growth scan of my first son at 34 weeks it was noticed he had an enlarged kidney. They induced me early but he seemed to have no issues. He had regular renal scans (every couple of months) which showed enlarged kidneys and/or enlarged bladder but as he had no other issues such as UTI then they decided that he didn't need any tests for reflux. He was also on antibiotics. The scans continued until he was 2 and although he was still seen as having abnromal organs he was classed as 'an enigma' as they had not seen it before with no infections.
They initially monitored my second son in the same way but his organs were always within the normal range.

So no experience of the reflux as such but I obviously researched it all at the time as you have. I seem to recall that it was more common in boys but that the operation was as a last resort following control through antibiotics etc.
Has your son had any other symptoms such as UTIs? They would only consider operating on a baby if absolutely necessary. I remember the dr telling us that either me or DP may also have these issues (as they're often genetic) but of course ante natal scans weren't done when our mums were pregnant ie. it's alot more common than we know and often require no treatment.
Hopefully someone will reply who has been through the op.

I am literally just in the door after a day at Bham Childrens hosp with my 12yo DD.

At my 20 week scan I was told my baby had enlarged renal pelvis but no proper diagnosis.
She was scanned (MAG3 and USS) at birth and monitored reguarly with the same sccans every 6 months and on Trimethoprim prophylaxis until she was 7yo.

Thankfully she had/s no reflux. However, neither kidney was functioning at over 60% efficiency.
When she was 3yo she had a stent inserted to stretch the tube that runs from kidney to bladder on her right side. This improved her kidney function somewhat - at its best 72% now 68%.

Slowly her left kidney has been deteriorating over the years but nothing too bad for intervention. Sadly today we have been told her left kidney function has plummeted and another op is looking likely. We are waiting for another MAG3 scan first.
I know that this isnt as awful as having a whole kidney removed but the Drs at the hospital have seen us for years and always explain that people can live 100% normal lives with 1/2 a kidney or less. It has been a rocky road over the years. There have been times when things have looked alot grimmer for her than they do today. For what its worth my 12yo DD lives a completely normal life. Yes she has 2 kidneys but neither working much over 60% for much of her life - so you could say she has had 1 and 1/5 of a kidney (not even tht atm as her left kidney function is around 40% as of today). She did dance - until it became "uncool" last year. She horse rides, plays loads of sport and in all the school teams for Hockey, tennis, rounders, netball and athletics. She swims loads. Loves hiking and mountain biking. Just come back from a 3 week school skiing exchange trip in the french alps and it was only her asthma that kept her off the slopes for 1 day. Her kidneys do not effect her day to day life at all.
We have brought her up to drink alot (as advised) to keep her kidneys flushed through and she has NEVER since her last op at age 4 had a water infection. We have limited salt in cooking in the home and because we do this I do not fret about dining out, when she stays at a mates house, eats crap at birthday parties or the latest craze "Burger King" shopping lunches with her mates. I was stricter when she was smaller but have relaxed alot more as she has grown up, so not to make her feel different and know when to put my foot down.

I know it is scary and very bleak for you just now. I remember my perfect baby girl having her first op and it was scary and heart breaking. TBH - I am scared of this next op. I cant hide any "bad" facts from her now as she is old enough to understand and be told the truth. The fact still remains - yes she has 2 kidneys now but there may come a time when 1 may have to be removed. These ops she has is buying her time. No one knows whether that will be her whole life time or just a few short years.
I just want to reassure you that your son has a bright and wonderful and normal life ahead of him despite this. I know my DDs condition differs to your sons, but it has its similarities. I just wanted to reassure you that its not as bleak as it seems now, although I don't mean to take away the horror you must be feeling about this kidney removal.

Is it Birmingham Childrens Hospital you are under?

Hi thanks for all the reassurance , his left kidney is functioning at 9% so in docs eyes useless, his right one has always been perfect and in essence doing to the job of 2 already. He is on Trimethoprim AB as a precaution from infection. TBH i am very worried and upset about the operation but in my eyes i rather they took it out, it will be horrid and painfull for him but a lifetime of infections would be worse i think. We have been assured it will not impact his life in any way and he can lead a "normal" life whatever that is! we are under Birmingham Hospital, Dr Chandra who i have found to be very honest and straight with us which has helped.
Collegemum38 we have had all the same tests that your dd has had and i am sure we will have more to follow! i am sorry to hear that your daughters kidney has gotton worse i remeber when i had my 20 week scan the consultant said that this problem was an inconvinience as everything else was perfect, always makes me smile when i think of that comment as he was right my son is a complete beauty and such a happy little baby! i find myself screaming "bloody Kidney" at no one imparticular and feel better! x