Hydroenphrosis/kidney problems

aliinportland

Hi All -

Our son was diagnosed with unilateral hydroenphrosis today.  This was a follow up to our 18 week u/s where they found one of his ureters to be enlarged.  The left kidney is totally fine. 

This time they were able to see that the blockage to the ureter was due to a little pocket instead of a valve where the ureter meets the kidney - called a ureterocele.  The ultrasound doctor thought he would probably need to go on antibiotics shortly after birth and would likely require surgery before he turns a year.  We meet with the pediatric urologist in a few weeks, but in the meantime, I am sad and nervous for my little boy.  If anyone has had any experience with this and would like to share, I would be grateful.  The surgery especially is really making me nervous.

cZa

You are not alone!! My son was diagnosed during my 20 week ultrasound. We had numerous scans before birth. When he was born he had difficulty urinating and they pumped him full of fluids and cathed him and he has been fine since. Both of his kidneys are enlarged but his left kidney is far more severe. He also had a VCUG (google it. that test was a breeze) His pediatric urologist has kept an eye on it and done regular ultrasounds. Everything looked good for about 4 months and the left kidney got more enlarged. The urologist ordered more testing and he had to be put under 

anestisia for a couple hours. The test was called a MAG 3 with Lasik. He was fine. The doctor also put him on an antibiotic at that time.

The test concluded that we are going to go the surgery route January 26th. He will be in the hospital for only a couple of days and the Urologist said he will be back to normal. The doctor also told us that the tests and surgery are much harder on the parents than the children and I have come to believe it.

I am sure your baby will be fine. It is a common condition and it has been much harder on me that Cullen. Good luck and feel free to PM me.

suzymarie

I don't know if is is exactly the same problem, but a friend of mine has been dealing with something similar with her 2 girls.  He older daughter was not diagnosed until she was 3ish, and seems to be outgrowing the problem.  They decided to test her new baby bc I guess it can be genetic?  Anyway the baby has it too, and they will probably be doing surgery on the baby.  They are currently deciding between surgery and an extended course of antibiotics.  She is leaning towards just doing the surgery since I guess the antibiotics aren't completely effective.

I have no idea if any of that is helpful, but I wanted to let you know that you aren't alone! 

cZa

suzymarie:

I don't know if is is exactly the same problem, but a friend of mine has been dealing with something similar with her 2 girls.  He older daughter was not diagnosed until she was 3ish, and seems to be outgrowing the problem.  They decided to test her new baby bc I guess it can be genetic?  Anyway the baby has it too, and they will probably be doing surgery on the baby.  They are currently deciding between surgery and an extended course of antibiotics.  She is leaning towards just doing the surgery since I guess the antibiotics aren't completely effective.

I have no idea if any of that is helpful, but I wanted to let you know that you aren't alone! 

I am almost postive that only polycystic kidney disease is genetic but has similar characteristics

aliinportland

Thanks ladies, this is so helpful! 

mom2be:)2008

I'm sorry you are going through this DD was diagnosed with hydronephrosis due to a ureter blockage at my 20 week ultrasound and we did several more scans which showed the problem worsening throughout the rest of my pregnancy.  She had when she was a couple days old and the problem was still there.  She never had any issues, we started her on antibiotics when she was 3 days old and she took them until she was 9 months.  She had several ultrasounds, a VCUG, and a Lasix Renal Scan, but did not require anesthesia for any of them, unlike the pp.  The tests scared me, but dd did fine with all of them.  Most of them were done prior to 2 months old, and she actually just slept through them   She had a repeat VGUG at 9 months old and that one I would describe her as "irritated" at being held down, but she didn't seem to be any any pain from it. 

After all the testing, dd was diagnosed with 2 seperate conditions.  On the right side, the one that showed up on the ultrasound as hydronephrosis, she had a complete blockage and all of the swelling of that kidney caused it to cease functioning.  On the left side, she was diagnosed with grade 2-3 reflux and that resolved itself after 9 months of age.

 At 14 months of age she had a robotic ureternephrectomy and they removed her right kidney and part of her ureter.  It was terrifying for me, but she came through absolutely fine, and by day 3 was 80 percent back to normal, by 2 weeks, she was running around and trying to jump off of furniture again

So even with the worst case scenario, which in my opinion was surgery, it wasn't all that bad.  The anticipation was far worse than the actual surgery.

Now at 18 months, dd is doing great

Good Luck with everything! So much excellent medical technology exists now, doctors can fix so many things that they couldn't fix before.

Just on a side note, we were told this is genetic.  DD's paternal great grandmother and paternal grandfather both have hydronephrosis issues.  There's were not discovered until adulthood when they got UTI's.  Some people can go through their entire lives not having any issues, so the surgery is controversial.  The reason dd's urologist wanted to do surgery is because that kidney was no longer functioning, but unlike other situtations where the nonworking kidney would just shrival up, her kidney was full of urine from her time in utero when it did function, and that could have caused a bad infection.

MrsWC

My son had surgery for this in Oct.  The thought of surgery was so scary, but it was not a big deal at all.  It was done on a Thursday morning and we went home Sat afternoon.  I stayed with him the whole time and I breast fed him and he slept on me.  My husband is a kidney Dr., I was a drug rep, my 4 year old has had 2 surgeries and I was in the hospital with my first son for 2 months and have had 2 csections.  Needless to say I am not afraid of hospitals.  The baby was only 4 months when he had the surgery.  We were lucky and the Dr was able to get a stent in and he came home with no drains.  The day he came home we gave him tylenol and then he was fine.  Overall, from my 15 sono to the day he had the surgery I thought about it every day, but in the end it was fine.  Good luck. 

alexandderek

Our DD was diagnosed with this as well at our 20 week u/s and had surgery to correct it at 3 weeks.  Surgery was scary, but it honestly didn't bother her at all.  She was fussy coming out of surgery, but did not require more than infant tylenol on the second day to combat what we thought was pain.  Her uretur was "kinked" and the pediatric urologist went in and removed that part of the uretur and reconnected it with the good part.  She had a tube that drained from her kidney to an outside diaper which allowed her uretur to heal properly and that was removed after a week.  

We have had 2 u/s with the urologist since then and her kidney is completely fixed and functioning properly.  Her hydronephrosis was severe and going ahead with the surgery so early saved her kidney function.  The surgery is controversial like a pp said, but knowing now that the function is good we are glad we went ahead and did it.   

If you have any questions, feel free to PM me.