Baby needs q4h catheterization

[tom_maddy]

It was pointed out at our 18 week ultrasound that our baby's bladder was not emptying. It was followed up with monthly, then biweekly ultrasounds where we saw his bladder getting bigger and bigger. We were told that he was letting urine out, because the amniotic fluid level was normal. Other than hyperemesis gravidarum, the only abnormality during the pregnancy was a low Pap A level on the 12 week screening and nucal translucency. When he was born (via caesarean because his abdomen was so large), he was catheterized for 800mL of urine. He has required intermittent catheterization (currently every 4 hours) since then, and he is now 4 months and we still do not have a diagnosis. He has had 3 VCUGs, spinal ultrasounds, urodynamic testing, and cystoscopy, the only finding of which is a large "floppy" bladder. He does occassionally void, but has residuals between 60 and 100mL. When he does void, it is a stream, so there is force behind it. Also, he has no other problems that would indicate a nerve disorder. Our urologist keeps calling it atonic bladder, but that irks me. He has tone, otherwise he wouldn't be voiding at all, let alone a forceful stream of urine. Sometimes he can actually push the catheter out of his urethra. We are frustrated and hope that you might have some prior experience with this sort of thing. Thank you.

[Jsm2014]

I have been researching a lot about my sons case and came across this rare condition called HINMAN SYNDROME or what others called neurogenic non neurogenic bladder.

[Mamamia001]

We are having same issue with our 4 month old son and we have no answers. I just keep hearing it's very rare and cannot seem to find anyone with similar issues besides you, which shocked me to find your post. Please please message me back, is live to hear more about your son and compare notes in hopes to find some answers for both these poor babies. Thank you. My email is mias0115@yahoo. Com

[Jsm2014]

How is your baby now? I have a 10 month old baby and we have been cathing him ever since he was born. Like your stroy we dont have any diagnosis yet and his mri was normal. Our urologist said that she doesnt know why my baby retains urine. He also has 60-100 ml residual everytime we cath him. He had ureteral reimplatation, stent placement and nephrostomy tube when he was 6 months old but no improvement since then, we still have to cath him q6h.