LUTO- lower Urinary Tract Obstruction

sept14

I hadn't realized there was High Risk board-- thanks appylovee for suggesting I come over here.  I can not believe how many boards there are than when I was expecting DS#1 just 3 years ago.  I ended up on bedrest with him at 8months and then was induced due to low amniotic fluid at 39 weeks.   

DS #2 has a very enlarged bladder on US and isn't urinating or at least isn't completely emptying his bladder if he is peeing.  He most likely has a lower urinary tract obstruction 

I know I am in good hands with the perinatologist we have been seeing for 2 weeks already and that we have discovered this earlier than some of the cases I have been reading about.  But, it is all so distressing.  Without urination, the amniotic fluid will decrease and the lungs will not develop, also the kidneys will also start to fail.other app

I have another appt with US on Monday--Hope to have a better idea about the treatment plan at that point.  Below is an US pic from this past Monday. 

appylovee

Not a problem, this board has been a life saver for me. Glad I could help.

DavezWife

Hi there,

I'm so sorry you're dealing with this. Unfortunately, I am too. (well, my son in my belly)

In short, we discovered it at about 13 weeks, and his scans looked slightly different than yours in that they thought he had some type of omphalocele with the dialated bladder, too. But that was the core of his issues. He's since developed more. ;-(  (they suspect "Prune Belly Syndrome" with him, although we did see the typical "keyhole" plug typical to a LUTO.)

You're right in that you're likely to be dealing with oligohydraminos (lots of new words to learn, it sucks) and eventually hypoplastic lungs. based on our inital findings, most docs I saw were very pessimistic. Our 1st  peri all but insisted on medical termination, but that was MAINLY b/c he has a healthy twin sister in there. They wanted to SR him to save her. We found another doctor. (to each their own) and decided to Carry To Term. (CTT)  We're all actually do quite well, actually, all things considered.

Baby Center has a lot of more specific boards you can cruise, some are private, most are slower, but I've found a lot of moms with similar issues, but very few with "just" a LUTO.  Have you done a CVS or amnio?

It just so happened that our little guy's bladder popped (we think, vs unplugged) at 20 weeks, something "they" all said would never happen. He appears to have decent lung function since (I'm almost 31 weeks) but there's no way to tell for sure. However, our biggest worry now is that we're not seeing good enough evidence of good kidney presence, when we really should by now. They "think" they see the left one. It's out of place and smaller. BUT... he's maintained some fluid since the "pop" and as of last week, it's actually almost NORMAL.  So something in there is making "pee"... just can't test it's quality b/c threat of labor to the whole twin pregnancy. (you could, in theory, talk about shunting that bladder, and testing the fluid to see if it's proper pee. Talk to your peri. Not all will do it, I have names of docs who will. It's easier said than done, because, like you, you can put holes in that thing all you want but if there's no place/room for the fluid to escape, because he's crammed in there so tight, then it's pointless. It's a tough situation, to say the least. )  Our son also has many other minor anomolies, some/all? due to this core belly/kidney issue.

ok, I could talk forever on this, and I will if you want. Just email me. I've kept a private online journal during all this, you can read all the medical talk you want. (I'm a nurse, too) I've also started "Cricket's Cadence" (in my siggy) to share his story, so that more people know what a brave and strong little boy we've got.

I'm not going to lie... you're in for a helluva ride, here. Nothing for us has been easy, because NOTHING has been black and white. EVERY. SINGLE. TIME we go get scanned, it's something else. Something new. Something else to complicate things. Exhausting! Hardest thing ever.  I'm at peace with our decision to CTT, but I'd be lying if I didn't just share that it's really really REALLY hard. You'd never think that something like a bladder obstruction could cause so much trouble.  We are just sitting here waiting.... prepared for the worse, hoping for the best.

My thoughts are with you. I hope you're one of those cases where you have very little complications and things come out great! seriously, email me if you want to talk more.

dav   id_an  d_tra  cie   at   ya   h ooo  (remove spaces)

DavezWife

ps - saw you mentioned a kidney transplant on the other board... we've met with "thee" top docs and surgeons around, and they all told us that's not even going to be an option. Mainly because the baby has to have had kidney funtion to begin with. (THEN lose it for whatever reason). We were hoping his twin sister would be a perfect candidate, etc. and that idea was just smashed. It was so hard to hear that. He likely can't even do a peritoneal dialysis either, due to his other tummy anomolies. :-(

Chances are, b/c you're doing such a good job being his "host" that he may not get that kidney function. Us moms do the job till they're born. He's right at that point where they're "kicking in" or supposed to be.  We're 30+ weeks, and still have not solidly identified proper kidneys for sure. Now is this situation just to our case, or all babies with LUTO? I do not know. I just wanted to share what I've learned about options for treatment.  And hope it doesn't apply to your baby one bit ;-)