10 Week Old Daughter with Fluid in the Kidneys

Dearest A.,

We haven't gone through the exact thing as you're going through, but I just wanted to send you a note of hope. When I was only 12 weeks pregnant with my last daughter, I had a sonogram that showed that my baby had a bubble behind her head. We went to a specialist and it was confirmed that she had a bubble filled with fluid on the back of her tiny head. I was told to get a Placental Biopsy which revealed that my baby had Turner's Syndrome. The doctor and specialist spoke and decided I should get an abortion, assuring me that my baby would be born with severe birth defects. My husband and I read up on Turner's and decided not to follow the advice of either doctor (nor of a third doctor, the geneticist). Six months later, we had our little Tessa and she was born with only one birth defect that not many people even notice at first glance. We still have a long way to go as Tessa will have to undergo treatments once she reaches puberty, but we know that we made the right decision and we're willing to do whatever it takes to help our daughter along the way.

If you can, find a pediatric specialist and get more tests done. With what is available in the medical field today, I'm sure something can be done. I don't know much about kidneys, but I hope my story will give you strength and hope.

In the meantime, I'll be praying for you and your daughter.

Much love,
D.

The same thing happened with my son (now 4.5 yrs old), we went to UCSF as well, the fluid (or what they called "matter") can stay in there for years..they will just keep checking, I was told it could take up to 4 years to empty and be clear. We would go for an ultrasound once a year... and wouldn't you know we just went for ultrasound for hydronephrosis and they are clear! no more ultrasounds! just keep your head up and if it turns out you just have to "keep an eye on it" there should be no worries.

good luck

S.

hi-
I have a 6 year old son who I have gone through the same thing with when I was pregnant with him. Where do you live? Did the pediatrician recommend a urologist? If you are in the Bay Area, I would HIGHLY recommend Dr Larry Baskin at the UCSF Pediatric Urology department. We have been seen there since before my son's birth. Make sure you see a pediatric urologist. It may be a condition called hydronephrosis. I don't want to scare you, but make sure you get your daughter seen as soon as you can.
Please feel free to email me if you want more information and/or support. I understand all too well how scary it can be to have to go through this with an infant.
The urologist may want to do an additional ultrasound, and maybe other kidney scans to check kidney function. The ultrasound can determine kidney size and the level of fluid. the other scans (I think one is called a LASIK renogram, and the other a DMSA scan) can determine kidney function. they may order blood tests to check creatinine and BUN levels. This is all to check function as well. I have done all of these with my son, some multiple times.
let me know how it goes for you and like I said- contact me!

A.,

My son had the same problem. They also found it when I was about 5 months pregnant. When he was born he was put on antibotics to keep from having a bladder infection. We saw a urologist from the time he was 5 days old to start running tests. His ended up being a problem in his bladder which was causing urine to reflux back into his kidneys. We followed it for his first year. Running tests and ultra sounds a few times. Since it didn't fix itself we had to have a surgery done call deflux. That did correct the problem and he is now off of the antibiotics. He has been great ever since. Now we have to just make sure that if he ever has a fever we check him for a bladder infection. So far we have had no problems.

Hi A.,

I have a son( 3 yrs and 8 months old now) with a similar condition.

When I was 16 wks pregnant with him, the ultra sound showed a slight dilation in one of his kidneys. Since then the doctors were monitoring my pregnancy, and we were hoping that this might get automatically corrected. By when I ____@____.com weeks, both his kidneys had major dilation, so they induced labour.

My son was detected with a posterior urethral valve, which was causing an obstruction, and thus resulting in urine getting backed up into the kidneys.
Due to this, he has not able to empty his bladder well. He had to undergo a minor surgery when he was 6 months old.We had to do a catheterization every 4-6 hours to help him empty the bladder till the surgery was done.He was also on a prophylactic antibiotic till he got potty trained to avoid chances of any urinary tract infection.

We are with Kaiser, so we are consulting Dr.Paul ____@____.com Hayward( pediatric urologist)
and Dr.Peter Kim( pediatric nephrologist). Both these doctors are still following him up - monitoring blood creatinine levels every 6 months, monitoring hydro nephrosis via ultra sound every 6 months. They will continue the same until my son is older, may be 10 years or so to make sure that the kidney functioning is fine as he grows old.

My son is very active and healthy kid, though he went through all these complications. I am really hoping that he outgrows this condition as he grows old. I have never got an opportunity to discuss this with any other parents having a similar situation. So I am also going through all the replies here to see what others have faced.

I really wish that your daughter outgrows this condition soon. Definitely see a urologist and get her checked up. Please feel free to contact me if you need to discuss further in detail.

All the Best!
M.

Hi, A. -

My husband and I are blessed to have adopted a daughter at 10-months old (she is now 19 months), and she was originally diagnosed with hydronephrosis. After a kidney ultrasound and another procedure, the doctors say she has a mild reflux condition (where urine backs up into the kidneys). She takes a prophylactic antibiotic nightly to prevent kidney and urinary tract infections. She will be monitored with kidney ultrasounds and biannual check ups until she is five years old. At that point, most likely she will have grown out of this condition. If not, minor surgery will be necessary to fix this problem.
We see Dr. William Kennedy at the Lucille Packard Children's Hospital and are very pleased with the information and the service.
I hope your situation is not this severe. More often than not, if this condition is diagnosed in utero, babies will "grow out" of this. Sorry if this is too much info. My best to you for a healthy pregnancy and also a healthy baby!

K.

I was told the same thing when I was 20 weeks pregnant with my son. They did another ultrasound at 36 weeks, and his kidney was even more enlarged. They told me that during childbirth, it usually corrects itself. When he was a week old, we had to repeat the ultrasound. Luckily, it had corrected itself. But, what we were told, in the event that it hadn't, was that he was more prone to kidney infections, and he needed to be monitored. My OB's grandson had the same condition, so he was very informed. He said that careful monitoring until about 2 years old was normal, and if by then it was not corrected, surgery would likely be necessary. Best wishes for a healthy baby!!

Same thing happened to my son. It depends on how much fluid, I think. The urologist evaluated the ultrasound results, and then told us to do another ultrasound at 6 months. If there's a problem, then surgery might be the next step.

My baby's been acting and feeling fine, though. It might have been an immature organ just working itself out. I hope that's the case with your daughter. Good luck!

Hi A.,

There is going to be a child's health panel in San Jose Ca. on Aug 2. Do you live in this area? This will be a great event to go to so you can ask professionals that are educating parents a healthier way to raise your children.
There will be 13 health professionals from around the country that will be at this event. If you are interested in attending let me know and I will put you on the guest list.

Have a great day.

N. Marie ____@____.com