Hi - new here - baby has urethra blockage & dilated kidneys

Olive21 · August 2013

Hi everyone. I am currently 17 weeks pregnant with my 3rd baby, and last week he was diagnosed with a blockage of the urethra. Initially the MFM diagnosed him with a complete bladder blockage, and gave us the worst case scenario speech (no lung development, kidney damage, etc.) so we then got a second opinion and it was clarified that it seems to be a blockage of the lower part of the urethra. Basically, there is an anterior urethral valve, which is extremely rare. His penis appeared to have a lot of fluid in it on the ultrasound.

I'm pretty worried about what this will mean for the little guy in the future, and I will now get weekly ultrasounds to check on things and see if my amniotic fluid levels are OK. As of last Friday, they were normal. I imagine no one has dealt with this issue, as even Dr. google reveals very little about it. It seems the most similar disorder is PUV - which can result in similar outcomes.

Any advice or stories are appreciated.

DahliaFlower · August 2013

I am very sorry for your baby's diagnosis and for the stress you are undoubtedly feeling.

Do they have any plans to decompress the bladder? My understanding is that regardless of where the obstruction is, there are potentially major problems that may result. Maybe the urethra is not totally obstructed but has a stricture?

I had a friend have this diagnosis, unfortunately it was fairly late and there was significant damage to the the baby's kidneys.

Are you seeing an expert on these disorders? Not sure if you are near a large center / children's hospital, but I would definitely be very aggressive, not just "wait and see."

kneenah1231 · August 2013

Not familiar with this condition but sending thoughts and prayers

Olive21 · August 2013

Thanks for the replies. Yes, we are trying to be proactive about this. We received the initial (very poor) diagnosis on Tuesday of last week, and that doc (a MFM) wanted us to just wait 2 weeks and then do an ultrasound to see if anything had changed. My DH and I were not willing to just wait and see, so we contacted Children's Hospital in Denver and were accepted right away to get a second opinion. I had an amnio done to see if there were any associated chromosome problems, and they had me do a fetal MRI, an ultrasound with a new MFM, a fetal echo, a genetics consult, and then a meeting with a team of specialists - high risk OB, MFM, ped urologist, surgeon, etc. They said that everything on the baby looks completely normal except what appears to be a partial obstruction of the urethra. They think it's partial because I had normal amniotic fluid, and because the kidneys and bladder were only slightly dilated so far, I'm going in tomorrow for another ultrasound, as I've now transferred care to children's and they'll monitor me weekly from here on. I'm super nervous to go to the appointment tomorrow as I'm scared that they were wrong about the blockage being partial, and that we'll see a worsening condition.

This is just such a scary diagnosis with so many unknowns. They gave me a few studies to read, but there is hardly anything published on this specific problem as it's pretty rare. What I've read has been positive and negative -- and at least one spontaneous resolution (which of course I'm hoping for) - but I'm being realistic and know that his condition could change in either direction. Wish me luck tomorrow!

Ayreka · August 2013

It sounds like you did a great job getting your baby some help right away. I hope you have a completely uneventful healthy pregnancy from here out.

DahliaFlower · August 2013

Ayreka said:

It sounds like you did a great job getting your baby some help right away. I hope you have a completely uneventful healthy pregnancy from here out.

I agree. It sounds like you are really on top of things. I am glad you got into the Children's Hospital and have already met with specialists. Hopefully if you need any interventions, they can help guide you in the right direction!

Hi - new here - baby has urethra blockage & dilated kidneys

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