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Advice needed re babies kidney issue

(3 Posts)
Beabou Sat 22-Feb-14 14:26:40

I revcently had my 5month scan and it was discovered that baby has one enlarged and cystic kidney, though the other one is normal it made my feel sick at the thought of my baby not having a properly developed kidney. I'm so confused and don't know what to think. Pregnancy is scary enough, this is me and my hubby's first baby so everything is all so new. Does anyone gave any advice of this at all? Or has anyone given birth to absby who also had this condition in the womb-please offer any help I'm going mad thinking about it all the time. We don't get to see a specialist for another 6weeks - thanks all you mums out there.

SadFreak Sat 22-Feb-14 21:33:05

Hiya. I had exactly this when I went for my 20 week scan with DD1.

She is soon to turn 16 and is perfectly healthy and leads a normal life.

The minute she was born she was whisked away to be scanned so they could find out a bit more about exactly what was wrong and of she needed any intervention straight away. She was scanned and back in my arms in less than an hour. There were abnormalities but nothing that needed immediate intervention.

The next thing was they all wanted to make sure we wee'd her nappy. Which she did soon enough.

I think she was 3 weeks when she saw the main consultant and I cannot recall what tests they did tbh but from then on she was monitored 3 monthly and put on Trimethoprim suspension (an antibiotic) which she took until she was almost 7yo as a preventative - to prevent infection.

At some point (I cannot recall when) they did MAG3 scans as well as Ultra Sound. This is when they inject a dye into the hand/arm and then scan/monitor how long it takes fliud to drain through the kidneys. This tells them how well the kidneys work. She now has this every other year.

2 months before her 4th birthday they decided my DD needed intervention as the draining of her affected kidney was slowing right down. She had a minor op under general anaesthetic called a balloon Dilatation - to widen a tube. They insert a balloon, inflate it and leave it to stretch the tube. She was in hospital 3 days and I was allowed to stay with her (also with her baby sister). 2 months later it was removed (another minor op) and scans indicated an improvement in function.

Ever since she has been weighed and measured and had urine samples and blood pressure tested 3 and 6 monthly. Once a year she has an ultra sound scan and every other a year a MAG 3 scan. All out patient appointments.

She has only ever had 1 water infection (last year). We are told to send urine off at anytime she becomes unwell with unexplained symptoms and its usual practice in our house to have sample bottles in the cupboard and me drop one into surgery every now and again - if she has had a temperature or been ill. Infection can lead to scarring of kidneys so it is important to treat an infection as quickly as possible - hence the need to test when she is unwell.

Thats it really. apart from having to mention it on travel insurance and school trip forms its has no impact on her life. She lives the same was as her younger sister who does not have the same problem.

When DD2 was born 2 years later - they also scanned her within a few days to make sure she didnt have similar issues but she is fine.

I recall being horrified and upset after my scan so can understand how you feel. I hope I have put your mind at rest.

Kidneys are one of the better things to have a qurk with because you have 2 and can live pretty normally with less than half of one not that it ios likely to come to that. Lots of kidney conditions have little impact on every day life and people with them can lead completely normal lives.

My latest worry is with DD being almost 16 and wanting to start going out drinking aoon. But I am sure I will over come that the same I have all the other worries along the way.

Please be reassured - this isnt anything awful and terrible.

Beabou Mon 24-Feb-14 20:44:25

Thanks so much sadfreak, you have gone into so much detail and I appreciate you recalling everything that happened to your daughter and I'm pleased to know daughter no 2 is healthy and fine smile it's reassuring to know your eldest lives a normal and healthy life. God bless

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