baby w/one kidney - follow-up?

[aet.tea]

Hello all,

We discovered during pre-natal ultrasound that our baby (now 12 weeks old) is probably missing her left kidney. They did a fetal echocardiogram, and the heart was perfect; they also did an amnio (our midwife wanted this information in order to continue with our plans for a homebirth) and everything was normal. We understand it is not that uncommon to be born with only one kidney and often causes no problems at all.

Now that the baby is here, our pediatrician is encouraging us to visit a specialist, have another ultrasound as well as a procedure called VCUG - in which they insert a catheter into the bladder and inject dye in order to see if there is reflux in the ureter, a condition that affects about a third of babies with only one kidney and can cause frequent UTIs which could potentially affect the kidney also.

We are OK with the ultrasound but are very reluctant to do the other procedure; it seems very invasive and introduces the risk of infection (which is exactly what they are supposedly trying to avoid/prevent). So far she has had no signs of UTI and our strong feeling is to leave well enough alone. If she had had UTIs, we would see the point of diagnostic testing, but not when everything seems fine.

Is there anyone else out there whose child has only one kidney? What was the recommended follow-up, and what was your experience?

Thanks!

[nomatterwhat]

Hi there, I know a mom who discovered that she only had one kidney during her pregnancy, She had no idea and had never had any unusual problems, subsequently both her children have one kidney and have no issues like for instance, frequently infections. My dd suffered blunt trauma to her kidney in a car accident. Basically, the organ died and had to be removed. She has had no complications, hope this helps.

[workjw]

I have an aunt with one kidney who has had no complications from it. On the other hand, dd (who has both kidneys and some extra ureters) has kidney reflux and a lot of problems from it. I would suggest that you see the specialist and have the ultrasound done, and possibly some blood testing done to make sure that the kidney is functioning properly. If all of those came back with good results, I might hold off on the VCUG. Just make sure that you are very aware of the signs and symptoms of UTI in infants and act at the first sign. Especially a high fever with no other symptoms. A UTI that moves into the kidneys b/c of reflux can be very dangerous for a child with one kidney.

fwiw DD has had the VCUG done a number of times, it's not a fun test, but it was much easier on her as an infant than as a toddler, and it only takes about 20 mins.

[WuWei]

I'd consider what you would DO differently with the information which you may gain from the VCUG.

Check out this thread with links to many prior discussions about VCUG.
http://www.mothering.com/discussions...g#post13567720


I would encourage extended nursing and whole food probiotics.

"probiotics prophylaxis was as effective as antibiotic prophylaxis in children with persistent primary VUR. " http://www.springerlink.com/content/1741p5k22284x265/


Pat

[aet.tea]

Thanks, everyone, for the input, it's very helpful.

I've also been looking at previous threads in this forum that talk about the VCUG so I've seen your posts, Pat, what great information.

I forgot to mention that the pedi also wanted us to start prophylactic antibiotics, which I'm pretty much resolved not to do. I've heard too much about people having problems with antibiotic resistance, etc., and I can't believe they're necessary with no indication of infection. Pat thanks for the link to the article that suggests that probiotics are as effective as antibiotics in this situation.

One question - how are probiotics administered to infants? I do take them myself (and drink kefir regularly), does this benefit her also? Or do we need to administer them directly to her?

[WuWei]

Originally Posted by aet.tea

One question - how are probiotics administered to infants? I do take them myself (and drink kefir regularly), does this benefit her also? Or do we need to administer them directly to her?

An option is to get agreement that you'll do a urine for culture and sensitivity monthly for the first year, and at the sign of any fever-indefinitely. That is how my friend got agreement not do antibiotics.

You could offer the kefir from your finger and gradually work up to a tablespoon around a year. Also, Kirkmans makes a hypoallergenic bifidum probiotic for infants. Again, just offer it from your finger.

Here's a link to the Kirkman Labs hypoallergenic probiotic. http://www.kirkmanlabs.com/products/...0_Spec042.html
http://www.kirkmanlabs.com/[e-mail]

But you want bifidum bacteria, predominantly.


Yes, baby gets probiotics from you. And your probiotics help your digestion and nutrients, thus milk. You could mix probiotics with pumped milk, also.

The big concern is the antibiotic resistance which develops with continuous use, PLUS the gut microbial imbalance which ensues due to the antibiotics! The alternatives when the antibiotic resistance develops is IVs and hospitalization, basically.

Here is a helpful resources page.


Pat

[workjw]

Originally Posted by WuWei

An option is to get agreement that you'll do a urine for culture and sensitivity monthly for the first year, and at the sign of any fever-indefinitely. That is how my friend got agreement not do antibiotics.

This is pretty much what we do now. DD was on prophylaxis for a very long time and still ended up with multiple infections and resistant bacteria twice. We have finally been allowed to take her off of the abx, with the agreement that we take her in for a urine culture with any fever over 101.5, or any other urinary symptoms.

I don't know what all the new MDC rules are (so please let me know if I need to remove this), but since I'm on dial up right now I figured I would just add the link to my resources page. It has a lot of links for VUR and there is a section that links specifically to studies on prophylactic abx and VUR.

I do "understand" in some ways why they would want to be so aggressive with an infant having only one kidney. A UTI that moves into the kidney is much more likely to cause damage in an infant under the age of one year.

eta- I think probiotics are a great idea (we give them to dd) but I will mention that the study says probiotics are just as effective as abx - and most recent studies show that abx are not effective, so I don't know. I do believe they are good for healing and health, just not sure if they are really a "treatment" for reflux per say.

[aet.tea]

Thought I would post a follow-up for anyone who might search this issue in the future.

We had our testing done this week. After giving it a lot of thought and talking to some other medical people in our circle of friends/family, we decided to go ahead and do the VCUG as well as the ultrasound. We had them done at a children's hospital; the staff there were very professional and didn't mind us asking lots of questions (and even asking for the credentials/experience of the nurse who inserted the catheter).

The ultrasound did indeed show that there is no left kidney; however the right kidney looks perfect, and there was no VUR (reflux) present. We are so thankful. The pediatric nephrologist, who we saw immediately afterward, said that everything looks good but that they do want to continue to monitor the right kidney by ultrasound - it should grow larger to accommodate the extra kidney function, and it hasn't done so yet.

We never did give her the prescribed abx and didn't get a scolding for it. Luckily that is not an issue at this point.

DD (4 mo now) did great. She barely reacted to the catheter being inserted and only fussed a little during the procedure when we had to hold her arms and legs down to take the pictures. The whole rest of the day she was happy, curious and social with all the people we saw - she is such a charmer.

Thanks to everyone who posted here with information - workjw thanks for pointing me to your webpage, I learned a lot.

Good luck to anyone else going through this process!

[crunchy_mama]

Hi- just seeing this posting my experience about my dh. He was born w/out a left kidney as well, he didn't find out until he was in his 20s. I hear this is much more common in boys than girls- at least what his dr's said. He never had any problems w/ this until in his 20s. Evidently the formation of the kidney was tied to the formation of one of his testicles as well. This meant that this testicle was malformed as well for him. Then this year he started peeing blood= at first they thought uti- but it ended up having to do something w/ where that other kidney had tried to form and then there was a tube trying to go to the bladder on that side which had become filled w/ blood and for some reason had just then at the age of 32 started to come out into his pee. He had the mass removed and now all is well.

[KatWrangler]

That is wonderful news! Please keep us posted.

Regarding preventive abx. I know among Urologist one will say take them and another will say don't worry about it. Eventhough my daughter is prone to UTI's, we have not been told to take preventative abx. I am just very watchful for UTI's. My daughter usually doesn't run a fever, like most people. I can tell by her crabbieness. Oh and the color of her pee, smell etc.

[sambo]

Hi There,

Our baby Lola now 5.5 months old had the same issues. Born with one kidney ( we found out while she was still in my belly), we had to have the same procedure done as well and I was not able to be in the room as I couldnt handle it so my husband went in. He said it was quick and relatively painless for Lola. It needed to be done and she took penecillin for 4 weeks ( which we hated) but we wanted to make sure she wasnt refluxing urine into the healthy kidney so it was neccesary.

Good luck!