Lower Urinary Tract Obstruction

[Island27]

Hello all,

I'm mainly looking for some support, words of wisdom, hope, for my situation. Any women who have been through this or know someone who have been through this I would love to hear from you.

My story so far:

This is my second pregnancy, first pregnancy was perfect, no problems or complications, delivered a healthy baby boy to term. I did my 13 week ultrasound for this pregnancy on Mar.1/13 and a follow-up on Apr.11/13 was when they told me that the baby's bladder was full and wanted to do another ultrasound that day. Did the ultrasound and same thing the bladder was distended and they referred me to a specialist at another hospital for the next day (Apr.12/13). After a detailed ultrasound, the doctors there told me that my baby has Lower Urinary Tract Obstruction, meaning that there is an obstruction in his urinary tract in which he's unable to pee, so the urine backs up into the bladder which affects his kidneys and since the urine is not able to be released into the amniotic fluid, his lungs may also be comprised. His bladder was huge with what they call a distinctive "key-hole" appearance. I'm 18 weeks at this point. I was terrified and sad for my little baby. The doctors gave me 3 options: terminate the pregnancy, the option to drain the urine and do tests to see if I'm eligible for a shunt procedure in which they would place a tube in the baby's bladder and the other end is in the amniotic fluid as a way to bypass the obstruction and have the urine escape through the tube out into the amniotic fluid so that the lungs will still be able to develop, and that the kidneys won't suffer too much more damage or third option, just leave the pregnancy as is and assess baby after birth. I discussed with my family and we decided to do the tests in hopes to get the shunt.

I've just been researching and trying to find other women whose babies have been diagnosed with LUTO. From what I've been reading and what the doctors were telling me is that there is a low chance of survival for these babies.

I'm really nervous, but hoping for the best. Anyone been through this?

 

[Island27]

Oh gosh, no one has been through this? I understand...it is a pretty rare condition.

 

[Sweetkat]

I hope this helps

https://childrens.memorialhermann.org/services/urinary-tract-obstruction/

 

[jensonsmummy]

Hey i have sent you a private message but im not sure whether my case is anything like yours, sorry Logan has two tubes draining his kidney so urine is getting out of one of his and the other that is going into the cyst is now coming from non-functional part of kidney so no new urine is entering.

The only thing i would mention - is it just one kidney affected? As the other kidney should be able to make enough amniotic fluid for baby to survive. Sorry i might not be much help for please PM and il help as much as i can

 

[Island27]

No both kidneys are affected. And even if it was just one kidney that was affected there would still be no way for the urine to flow into the amniotic fluid due to the obstruction. So if I just left the pregnancy as is with no intervention, the amniotic fluid would eventually dry up because the urine can't be released. Now when I get the shunt it will help to bypass the obstruction and the urine will be able to escape through the tube into the amniotic fluid for survival.

 

[divershona]

My best friend has just had her 1st scan and it appears that her LO has the same problem as your LO. She has been given the same options as you. but its still very scary. she is going to be seeing a specialist tomorrow morning with the hopes that they will be able to help in some way, and hopefully get started doing the tests that need doing to see if she's eligible to have a shunt put in.

 

[Fuchsia1412]

What will make you eligible for it, do you know? Is it to do with the viability of the baby or how badly the LO is affected by this? So sorry, how devastating to hear something like this. update us when you know more about the shunt..? like-what would stop a baby being able to have one? Maybe just a few questions to think about when you see a specialist..?

 

[Fuchsia1412]

Try this one. bit wordy but gives some more info, I just had a read. https://www.fetalhope.org/patients-families/condition?cid=209&p=1

 

[Fuchsia1412]

I posted because it gives info about in which cases a baby can or cannot have the surgeries and more about the different managements. I hope and hope that you baby can have the shunt.

 

[Island27]

Thx for the reply's. It's been such a busy past couple of weeks, traveling back and forth to the high risk hospital, getting the tests done, consulting with different specialists and such. Unfortunately, the result of my baby's urine when tested was way above the threshold values which indicates no kidney function, therefore not eligible for the shunt. I'm completely disappointed as this was the only way to help the urine by pass the obstruction. The doctors say there is basically no hope, as the amniotic fluid level has dropped and the values are too high for fetal intervention. I was at the point considering termination (It seemed like the doctors were pushing it) because of the low prognosis for survival, but just couldn't bring myself to go through that process. It just hurts me to know that my baby has this full bladder which cannot be relieved which then affects the rest of his organs and nothing can be done about it. Do I continue on with this pregnancy knowing that he may not survive because his lungs won't be able to develop due to the low amniotic fluid, or terminate now because of the poor state that he's in and low risk of survival? (those are questions I have to answer.) I feel that he is in pain with that big bladder and no amniotic fluid surrounding him. It hurts big time. I'm praying for a miracle.

divershone: if you can, would you be able to update me on your friend's baby's condition? It's hard to find someone who has been through this condition with their baby.

 

[amelia26]

I am so so sorry to hear your news. I cannot imagine how difficult your situation must be.

X

 

[Ga_Fl]

I only joined this because of you came up when I was goggleing my babys condition. I am going through the exact same thing right now with my third baby. I am currently 24 1/2 weeks and will be carrying the baby full term. No amniotic fluid, kidneys to far gone for help. Tortured and sad. Message me if you want to talk. Its so hard.

 

[Island27]

Hi Ga_Fl, I was going to send you a private message, but you don't have the feature available. It is hard to go through this...especially since it's so rare, it's hard to find other women who have been through this. I've also decided to continue with the pregnancy and I'm currently 30 weeks and 1 day now. I've gotten a lot of encouragement and positive outlooks that my baby will be fine. Just have faith and believe in God that he will heal your baby and all his organs will be in working order. Are you feeling a lot of movement? My little guy is very active, he moves around constantly so that reassures me that he's ok and will be just fine. Take all the negativity out of your head, think positive thoughts, pray, believe and watch God perform a miracle on your baby. Whereabouts are you by the way?

Have a look at these stories of babies who survived this condition:

https://www.fetalhope.org/patients-families/stories/?sid=771

https://www.fetalhope.org/patients-families/stories/?sid=770

https://www.fetalhope.org/patients-families/stories/?sid=966

 

[Emily53]

I only joined this because of you came up when I was goggleing my babys condition. I am going through the exact same thing right now with my third baby. I am currently 24 1/2 weeks and will be carrying the baby full term. No amniotic fluid, kidneys to far gone for help. Tortured and sad. Message me if you want to talk. Its so hard.

I'm presently going through the same thing!! Please tell me your outcome. I'm 22 weeks to late for any intervention. Kidneys are damages. No amniotic fluid for a month now. I thought about terminating but just can't and won't. Please let me know whats happened to you???????

 

[Emily53]

Hi Ga_Fl, I was going to send you a private message, but you don't have the feature available. It is hard to go through this...especially since it's so rare, it's hard to find other women who have been through this. I've also decided to continue with the pregnancy and I'm currently 30 weeks and 1 day now. I've gotten a lot of encouragement and positive outlooks that my baby will be fine. Just have faith and believe in God that he will heal your baby and all his organs will be in working order. Are you feeling a lot of movement? My little guy is very active, he moves around constantly so that reassures me that he's ok and will be just fine. Take all the negativity out of your head, think positive thoughts, pray, believe and watch God perform a miracle on your baby. Whereabouts are you by the way?

Have a look at these stories of babies who survived this


I'm presently going through the same thing. No intervention possible. I've seen UCLA and USC doctors. All say its too late. Im22 weeks and babys kidneys are damaged, lungs aren't developing. I haven't had amniotic fluid in over a month. It's a night mare. I don't have the courage to terminate. Please let me know what your outcome was.....