Posterior Urethral Valve Syndrome?

[anr0014]

We had our level II ultrasound today at 16 weeks 6 days. They suspect our baby has Posterior Urethral Valve Syndrome. They noticed that his bladder was 2-3 times larger than it should be, but the amniotic fluid that is present is within normal limits. We are meeting with a specialist either today or tomorrow to discuss our options. For some babies with this condition, there is an option of fetal surgery, but only for qualified cases without kidney damage. I guess my question is, does anyone know about this condition? We are just so lost and cannot believe this is happening again. We thought we were through the hurdle after our 13 week ultrasound to rule out the condition that Jake had and now we have a new condition that is also life threatening.

I can't keep doing this... WHY DID THIS HAPPEN?

-Mandy 28
dh Chris 32
ds Jake b/d due to SRPS 3/16/07
baby boy "Cabo" due 1/21/09

[motherofthree]

Oh, sweetie, I am so, so sorry. I wish I had information for you, Mandy...all I can do is pray for your sweet little Cabo. Try to be strong; you will all continue to be in my thoughts and prayers.

[Lindzy Foster]

I have never heard of it but will google and start looking....I'm so sorry this is happening and will be praying that it turns out to be a false diagnosis and pray for the health of this little guy and strength for you and Chris....please keep us updated Mandi!

[Rayna']

I've never heard of it but I am sorry you are going thru this!

[Janice]

I am so sorry that you have to experience this heartache. My thoughts and prayers are with you and your family.

[Cindy Wilson]

Not sure if these networks are appropriate for your childs condition but a friend has a dd who was born with plumbing issues and found lots of help here.
http://www.pullthrunetwork.org/

http://www.vacterlnetwork.org/about.html

All the best,

[Lisa Kammel]

Mandy you are in my prayers!!!!!!

[Hailey's Mommy]

I am so sorry that you are going through this...i will see what resources I can find about this condition.

[Marcus Momma]

I am sorry about this also I will be praying for a good outcome. You are in my prayers.

[momofanangel]

Mandy, I will be praying for you, your husband and your baby boy.((hugs))

[rsonnino]

Hi Mandy:
posterior urethral valves are little flaps of tissue on the posterior surface of the urethra (therefore the name), i.e. the tube that allows the urine to drain from the bladder. They can cause a very serious obstruction of the urinary tract that can work its way back up to the kidneys, causing severe kidney damage. If caught early (before they cause damage to the kidneys) they can be treated very successfully. At this early stage of gestation, odds are good that the kidneys are still ok, even if you are dealing with PUV.

Obviously the first step is to allow your doctors to confirm that this is the problem, or let them figure out what it is. Do not despair - yes, if that is what it is, it may require fetal surgery, but it is a procedure that has been done a lot, and in the right hands - someone with experience - the outcome can be very good.
Best of luck to you, and please keep us posted.
Roberta

[amburke2]

Mandy,
My husband and I are so sad for you! I'm so sorry you have to go through this.

Roberta did an excellent job of explaining what the condition is. The only thing I will add, that many may already know, is that the urine draining from the baby's bladder is amniotic fluid, which is necessary for baby growth. Not only will an obstruction damage the kidneys, but a lack of amniotic fluid will inhibit lung development since baby's breathe in the fluid. PUV was one of the conditions that doctors suspected Timothy may have had. Further ultrasounds ruled it out, and he was diagnosed with multi-cystic kidney displasia, which is not treatable. In a way, we were actually hoping for PUV so that we could be able to do something (have surgery).

It is early for little Cabo, and I would encourage second opinions to get a firm diagnosis and a full range of treatment options. Time is important, so I also encourage you to stand up for Cabo's rights as a patient and your rights as parents.

Again, I am so sorry you have to go through this medical gauntlet again. When I say rosaries, I ask Timothy to pray with me. We'll devote the prayers of our next rosary to your family.

[Cheryl Haggard]

Mandy, I had a friend who was pregnant with a son with this condition. If I remember correctly, he had surgery as soon as he was born. He is a thriving 9 year old today...

My thoughts and prayers are with you...
C

[Kristi]

Mandy
My son Quinton is due Oct. 19 2008 I am being induced Sept. 18 He suffers from the same condition it is also referred to as LUTO I was very miss lead by the Fetal Material Spec. I seen!!!
Please Please Email me at jandkschutter@gmail.com or Call me 785-580-7895 soon. Because of how far along you are it is very timely you act quick to do anything!!!! The sooner you act the better outcome. It is a 1 in 5000 chance and research for this is very diff.I am currently in the process of creating Quinton's Quest a foundation to help people just like us for LUTO awareness. The key thing is don't let one doctor form your opinion!!!! I have five tell me five diff. things I could of done. Two great sites for info to start you off is www.chop.edu just use their search tool and type in LUTO. The overview that's listed under treatment options will provide you a great def. The second one you need to look at is www.fetalhope.org go to conditions.
I wish you the best!!!!!! There is still hope and don't let any doctor tell you anything diff. Please contact me and stay in touch! :)
A mother feeling the same pain at the same time

[Andi]

Kristi - Thank you for trying to help. Mandy's baby Ethan passed away a week ago. The posting is two below this one titled, "Please pray for us..."

Andi

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