hi
my son was born with posteria urethral valves, we have known of his condition since our 20 week scan. surgery has been delayed for a week as everything is still too small. his surgery is to repair/remove the valves. i was wondering if there are any other mums out there that has been through similar experience and tell me how there little one is doing now. his kidney function is also not good as they had thought it would be and have been told little about the complications that could occur. any news good or bad i would love to hear about.
thanks belinda

Hi smile

My DD2 didnt have posteria urethral valves, but she was born with duplex kidney (2 ureters going from her left kidney to her bladder instead of 1. One of them was malformed) and a uretocele (cyst blocking the entrance into the bladder from the malformed ureter) causing blockage and kidney reflux. She had a high risk of UTI's which she constantly got even when on anti-biotics, and had alot of pain issues (they compared the pain like kidney stone pain). Her left kidney also wasnt functioning as well as the right. I think it was around 35%.

She spent some time in hospital with 2 UTI's, and had several scans which showed her condition was getting worse, so rather than wait til after her 1st birthday like they wanted to, she had an op at 9 weeks old. It was a relatively simple procedure where they put a tiny camera & a wire prod & poke holes into the cyst to let urine flow properly. There was a mishap where they accidentally perforated her bowel so she ended up needing further surgery to repair that, but the original op seems to have worked well. A followup scan showed her kidneys were functioning pretty much equally, doctors are happy with how she's getting on. She still has checkups to make sure everythings still working as it should.

These days you wouldnt even know the troubles she had as a young baby (aside from her tummy scar from her second op to repair her bowel).


I know my story is abit different to yours, but I hope it helped abit. Its such a nerve racking time full of uncertainties. Its good to know the babies are amazingly determined at surving. Hope it all goes well!!