Friday, September 04, 2009

My Babe

Here is my cutie. He's my third and my last. He also has hydronephrosis--which sounds scarier than it is--in his case. During a prenatal level 2 ultrasound an anomaly was noted in his kidneys. I went for an additional ultrasound a week before my due date and the anomaly had gotten slightly worse. My little guy had urine in his kidneys. Seriously! Yes, kidneys produce urine, but they are supposed to get rid of it, not accumulate it. That is what the bladder is for. I am just going to relate what I know about his diagnosis. I try to include some general information, but I am no doctor and I am only writing it as I understand it.

Hydronephrosis is the most commonly ultrasound-diagnosed prenatal anomaly and primarily occurs in males. Half of all cases resolve spontaneously prior to birth. Urine in the kidneys can have a few causes. If the ureter from the kidney to the bladder is obstructed or the valve does not work properly it can prevent urine from flowing out of the kidney. If the urethra is obstructed, it can prevent urine from leaving the bladder and, upon straining, the urine can flow backwards up the ureter back into the kidneys. That is called reflux.

Urine retained in the kidneys damages kidney tissue by stretching and thinning the organ. Such damage can lead to kidney stones and scarring, reducing kidney function. Urine in the kidneys can lead to infection. In the case of reflux, a bladder infection will immediately move from the bladder into the kidney.

We were not one of the lucky 50%. His hydronephrosis was still apparent after birth, as confirmed by ultrasound visualization of urine in the kidneys. Within the first month he was on daily antibiotics to reduce his risk of a bladder infection. What we did not know was whether his kidneys were blocked and would require immediate surgery or if he had reflux which would increase his chance of kidney-damaging infections. Our first month after birth was fairly busy with tests and doctor appointments, medicines, and worry. Every time I changed a diaper I worried I might be introducing bacteria into his system that could lead to long term kidney damage.

Our first referral to a urologist led to a fairly uncomfortable test called VCUG. Using a catheter, they pump his bladder full of dye while under an x-ray machine. Once the bladder is very full, they remove the catheter and image his urinary system while he evacuates the liquid. This test would show them all of the tubes involved in the process and let us know where that urine ends up. That test would tell us the most likely cause. We also had to know whether he was getting better (less urine was in the kidney), staying the same (urine content in the kidney stays static), or if it was getting worse (kidney continues to fill even more with urine). That meant an additional ultrasound a month after the first to check the size of the dilation in his kidney.

Not only did he have a kinked ureter, making it difficult for urine to move into the bladder, he also had a hard time relaxing the muscles involved to get the urine out of the bladder leading to reflux. We got some numbers which, basically, meant that one of his kidneys had reflux without distention and the other had a moderate amount of reflux that causes urine to be forced into the kidney causing it to enlarge. Because of the reflux and its severity we were referred to a pediatric urologist.

The kinked ureter is likely to straighten out as he grows. The reflux, however, meant that we had to continue with the antibiotics. We were not out of the woods yet. We still had to learn if the accumulated urine was getting worse and by how much. If it was getting worse, we may still need to deal with surgery for our three month old.

One month later, an additional ultrasound showed that the kidney was not enlarged any more. It had not gone down either. The amount of urine in the kidney was the same. This was a small relief. We were not facing an immediate surgical correction. We could continue with our lives for a year--provided we gave our baby antibiotics daily to reduce the risk of a bladder infection. Once a year had passed, then we would know whether we were still facing surgery.

He is now 20 months and we are well past his one-year check up. His condition is the same. He has not reduced the amount of urine being held in his kidneys and may never do so. His kidneys also have not increased in the amount of urine they are holding. The pediatric urologist allowed us to stop the daily antibiotics since he was circumcised.

As it stands now, he is still at a higher risk for kidney stones, it is likely that my husband or I have this condition as well. 50% of the children diagnosed inherited it from a parent--that may be why kidney stones are so inheritable as well. Lucky me, my mother has had numerous kidney stones. My oldest daughter, Hanover, has one kidney larger than the other and likely had this condition as a small child as well.

And the reason I post this now is because I think of it everytime I give him a bath. I did not post it before. If I thought about it too much, I would have been a wreck. I was worried about my baby needing surgery. I was scared that he might damage his kidneys through infection. I could not do anything but wait, so I tried to keep it out of my thoughts. I did not like to talk about it to friends and only discussed test results with family. It is easy to relate all of this information now. Now that I know he's OK for the time being.

What I found really funny is that I stopped taking him to any of the pediatric urologist appointments. Everything the doctor needed to know about was tucked away inside my little one's body cavity and as long as the doctor had the x-ray or ultrasound results he knew everything he could about the state of the condition.


Realist Theorist said...

Wow, with minor variations, this could be about our son. In his case, they did surgery before he was a year old and placed a stent in his ureters. Then, they took it out after a year.

Took him till about three to be stable, though he might have to get an ultrasound every one or two years till he stops growing.

Rational Jenn said...

He's super cute. My toddler stands on the dishwasher door in just the same way!

Good to know he's doing okay. I can't imagine how nerve-wracking it is for you, but it's good that this is something the docs can keep an eye on.

Kim said...

Jenn, great minds think alike! There's always a race to see who can get to the breakables.

I think about it frequently but I don't stress about it like I used to.

I'm sorry your son had it too, Realist. And he had to deal with surgery. I'm glad to know that he's good. Did he ever end up with kidneys that didn't have urine in them? I was curious whether he will always have a little pocket in which urine can sit or if the kidneys can shrink back down when the problem is resolved.

The physician's assistant at our pediatricians told us his son had the same thing. Except they didn't figure it out until he passed a kidney stone when he was three years old. He's still on antibiotics two years later.

I almost put in a paragraph about recognizing that there are many worse possible outcomes, but then I realized that it didn't matter in a way. Sure, it could have been worse, but it was still stressful.

Ashley Allain said...

What a cutie!! I am so sorry to hear he has been through so much. I am happy to hear your good news and that things are stabilizing for him. Even though I don't know your family, I will keep you in our prayers. Thanks for sharing your story. You are very brave. I wish you the best .

christinemm said...

Oh my gosh. What a situation to go through.

When I saw your first bath post on FB I thought "why did they wait so long"? But it was none of my business so I said nothing.

I wonder if this is a condition that is benign for some that our med system labels as a disorder.

I had a situation with my younger son when he was 3 that was very stressful. To cut to the chase my son has a "diagnosis" that happens in 66% of humans and is totally benign in those 66% of people, yet is still considered a diagnosis that needs testing. It seems to me that looking for the test with that result is then flawed, as 66% of those with that are healthy. It is a kidney thing too that the pedi nephrologist said either DH or our grandparents most likely had but were not tested for so no one knew.

When I see you I will tell you a story also about normal breasts being id'ed on mammogram as abnormal and a breast surgeon telling me "most radiologists don't know what a normal breast looks like in a mammogram and make wrong diagnoses". Lovely. Not.

Kim said...

Thanks, Ashley.

Christine, if he were to get a bladder infection it would turn into a kidney infection and possibly damage his kidney function. If his ureters had been blocked, his kidneys would continue to swell with urine, damaging their function and become painful. So that part of it would be serious. Now that we know he's less of a risk for either of those it's become just one of those things you live with.

I think whether or not the doctor orders tests for a symptomless condition probably depends highly on the doctor. I've been to doctors that blow off things that are painful and doctors who order every test in the book for something mild.

I'm glad that whatever it is, it is of no consequence!

Crying Baby Help said...

Reflux may trigger the baby to cry but in order to prevent it, there are ways to follow such as keeping the baby upright after feeding, using wedge pillows and trying not to lie the baby after feeding. In a way this can help to stop the baby crying.