Terrified 23 weeks baby has LUTO, Small lungs, one small kidney, oligohydramnios

[PeanutBug]

I know it's highly unlikely I will find someone who has experienced what I'm going through as we've been told our situation is very rare.

At our 20 week scan they found an anomaly around the kidney/bladder area which we later found out is a urinoma where urine is leaking and creating a cyst, likely from one kidney that may or may not still function (they can't get a view of it on the scan as the cyst is in front).
We've had multiple scans now as fetal medicine, the first being a huge devastating shock of this diagnosis and being given the option to continue and monitor or TFMR (this has been brought up at every appointment).
I'm now nearly 24 weeks and have had various tests- amniocentesis to drain the cyst and test the fluid, mri and bloods. The mri showed that our baby's lungs are half the size expected for this stage of the gestation and that he has posterior urethral valves which in turn gives a LUTO diagnosis. On top of that last week I was oligohydramnios which of course affects lung development more but we had originally hoped that the fluid was high enough to not impact lung development but now it might. We've had discussions with children's lung and kidney doctors to give an idea of what life could be like for our baby once he's here if we continue. Obviously they provide the worst and best case scenarios to properly prepare us but I can't help but to feel like that doesn't necessarily mean that will be our case. It is a desperate situation we are in and i feel terrified at what the future holds. No doctor can truly tell us what may happen for him which makes it so hard to know what to do.
I guess I am hoping for some stories from other people who may have experienced similar in some shape or form?
Thank you

Nothing similar, @PeanutBug and no advice to offer. I'm not even familiar with the conditions you've listed. But I know you will find the strength to face whatever you need to, because that's what mothers do. I don't mean that to sound trite, it's just that maternal love pulls down enormous reserves of energy, strength, courage and determination to protect your offspring so that parents do what they never imagined would be possible. It's love that does this, and whatever challenges your baby faces, you will love them and do whatever it takes for them to have the best possible life. 💐

Hello,
I'm so sorry you are going through this, we went through a very similar situation (though different condition.) At 22 weeks my little girl was diagnosed with Ventriculomegaly (water on the brain.) Like you our life then became a non stop cycle of tests, scans etc etc. It was beyond hell. And all whilst constantly mentioning TFMR. But they couldn't tell us for certain what her life would be like or what we should do. It was all, "this is what it could mean." Which I understand from their perspective but it isn't helpful to you at all.

In the end we decided to go with the science. I read every peer reviewed medical journal I could get my hands on. And we decided that if her vents went above a certain size we would TFMR. The size we decided was classes as severe, with typically very negative outcomes (no guarantees though.)

After a few weeks her vents did go above that size so we did terminate.

I won't put any more on a public forum but feel free too message if you would like to talk anything through. And huge huge hugs to you. I'm so very sorry x

I’m not familiar with the condition but it might be worth talking to ARC about this - they were so helpful to us in a different very difficult ante-natal situation and talked us through all the options calmly but also very gently as I sobbed down the phone. I’m so sorry for your situation xx
https://www.arc-uk.org/