| Name: Nicole R | Date: May 14th, 2009 4:35 PM |
Hi JJ-
Great to hear from you. I am almost 36 weeks.
I have heard my perinatologists are very conservative (evidenced by their push to have me do an amnio with fluid levels at 3.0 mm & 3.5 mm). I may take your idea & go get a second opinion if they suggest early delivery. Something tells me it's not necessary to take that step (again, unless the fluid levels prove to be much more significant next week) AND it means I have to deliver in Reno, without my regular OB/GYNs & I live in Truckee, Calfiornia. There are several negatives to delivering early but, of course, I would not ignore this suggestion if it means that is what's best for our child.
The only lingering major concern I have is kidney transplant & dialysis. Have any of your doctors spoken about this? Mine has not yet but my cousin's wife (who, coincidentally, is an infant kidney specialist) mentioned it & said it had a 50% mortality rate. That is what has me most worried. Even IF we have to have surgery for the baby I hear it is relatively straightforward with great success rates.
Anyhow, thanks for your thoughts, opinions & support. Look forward to hearing back from you again. Nicole ↑ |
| Name: JJ | Date: May 16th, 2009 8:47 AM |
Hey Nicole R,
No one has discussed kidney transplant or dialysis whatsoever.
I saw an amazing pediatric urologist on the 14th. He said at this point (with my previous ultrasound showing healthy amniotic fluid and dilation measurements 16mm and 8mm and the actual kidney tissue is looking healthy) early delivery is not indicated.
He said that we would continue to keep an eye on the amniotic fluid and the dilation measurements and if anything drastically changed, of course, we would re-assess.
He said that the with my numbers, the point of really seeing him before my little guy is born is to discuss what needs to happen after birth. He said that it is very important that the baby's kidneys and bladder are checked and that a VCUG is performed. These tests he said will indicate what is causing the dilation. Most likely it is a UPJ obstruction or reflux and not very likely, but they would like to rule out a 'posterior valve' issue.
He said, with the dilations the size that they are, my baby will not need surgery right after birth and that the odds of him needing surgery even half a year or so down the line is minimal. And yes, if surgery is needed for what is basically considered a 'plumbing issue' it is very straightforward and successful.
I have actually switched hospitals and OB as of Thursday so I can deliver out of the hospital he is affiliated with so he can see my little guy right after birth and be the one who is doing the testing and follow-up on this issue. They had me do another ultrasound there yesterday and the numbers are still basically the same (16mm and 8mm) my new OB called me last night after reviewing the results with the specialists and said that the dilations and my amniotic fluid was holding steady and that it was all very reassuring at this point. She even said that the smaller one, 8mm, they would not even call hydronephrosis at this stage of the game . . . that it is a 'normal' size for this point in gestation.
Nicole, provided that your amniotic fluid levels are good and that you are only dealing with a dilation issue and that the actual kidney and kidney tissue is healthy, it's hard to imagine that you really need to delivery early . . . really what is most needed is timely and proper testing post birth and then most likely just observation and monitoring over time as the likelihood of the dilations resolving over time by themselves is great.
Yes, kidney transplants are horrifying no doubt, but if your baby has healthy kidneys that are just dilated, you are just looking at a 'plumbing issue' that can be, worst case scenario, resolved through a straightforward surgery.
Good luck! Keep us posted.
JJ ↑ |
| Name: deirdre | Date: May 16th, 2009 9:40 AM |
| im 29wks and my babies kidneys are enlarged and bright theres no cysts found,what does this mean? can someboby explain ↑ |
| Name: angela | Date: May 19th, 2009 2:10 PM |
| Deirdre, please read the whole blog. You will find so many answers. And 99.9% of them are very positive ↑ |
| Name: jess0782 | Date: May 19th, 2009 9:21 PM |
| hi everyone i am 22 wks and my dr detected pyelectasis on my baby girl ... my dr said it was something normal on a male fetus but when it is detected on a female fetus that there is a probability that my baby comes with down syndrome need help and advice pls help ↑ |
| Name: sarah sh | Date: May 20th, 2009 4:06 AM |
| @jess 07well..if u read this whole chat thn u ll cum to know that there r many girls in and secondly its comman in boys but fetal gender doesnot matter.....so dont worry just have faith. ↑ |
| Name: alli2973 | Date: May 20th, 2009 2:03 PM |
| Jess0782, Did your doctor tell you the size of the dilation and did you have the first trimester or AFP screening? I too am having a girl but have not heard that means a probability of DS. In fact going back through all of these posts I have not seen any statement like that mentioned at all, it seems pyelectasis is more common in boys but risk is apparently is gender neutral. What did your Dr. suggest as follow up steps? ↑ |
| Name: angela | Date: May 20th, 2009 2:46 PM |
Hello jess0782!
First, please do not get upset! I am having a girl too. And I am totally agree with alli2973 and Sarah sh. The Gender does not matter! I went though the whole blog twice and did not see any were even a slight comment that if you have a girl with pyelestasis then it is automatically means a probability of DS. My doctor had told me that pyelestasis is a little bit less common in girls then in boys. That is it. No mentioning what so ever that the girl have higher chance of having DS.
I had my first trimester and AFP screening done. And it came out really good. But then I had US at 19 weeks and my girl’s kidney were dilated (4.2 and 4.9). I totally freaked out and did the amnio. The results came back negative. My baby doesn’t have DS or any other genetic problems. I did the amnio only because of my age. I am 39. The age is the huge factor in DS, not the gender of the babies. ↑ |
| Name: Nicole R | Date: May 21st, 2009 7:32 PM |
Jess 0782- it seems awful to put thoughts of "probable" Down's Syndrome in your mind because you're having a girl. Pyelectasis is found in both boys & girls & in MOST instances (again, read through all these blog notes) D/S is not found.
I had an amnio done (I do not know if I'm having a boy or girl) & my results were negative.
JJ- Thanks for your post. I have another ultrasound tomorrow, Friday, at 9 am. I think this one will give us a lot of answers & I DO have intentions of seeking a second opinion if early delivery is recommended.
I saw my OB/GYN today & mentioned that I really want to deliver with he/his team & here in Truckee & he said he just delivered a baby with far worse Pyelectasis than ours & it was not required that they deliver elsewhere since most of the testing done on the baby is well after birth.
I'm thinking good thoughts for my little-one-in-belly. ↑ |
| Name: newmommy1 | Date: May 23rd, 2009 3:52 PM |
JJ,
We live in Southeastern Virginia. Our surgeon was originally at Syracuse NY and our local Children's Hospital recruited her. She is excellent. Please keep me posted if you'd like additional information. ↑ |
| Name: Lex | Date: May 30th, 2009 8:34 PM |
| Name: LHS | Date: May 30th, 2009 8:42 PM |
| Hello Ladies---I promised myself that after I gave birth I would come back on this site and share my story and support. At around 28 weeks, my baby (Girl) had a dialated kidney at around 6 mm....i drove myself absolutely crazy with worry and concern especially because it was a girl and I kept on hearing it was more common in boys. The reality is I just would not listen to my obgyn or the peri on what they were telling me because I was fixated on being negative (blame it on hormones). what they told me was both boys and girls have this show up on ultrasounds VERY often. In fact, it is the most common "abnormality" to come up on ultrasounds. Also, seeing this abnormality is isolation does not raise a women's risk alone. I basically ruined my whole pregnancy consumed with emotion and worry. I know it easy to tell someone not to worry because so many people told me not to worry and I did not listen at all. Anyway. my daughter was born a month ago....a healthy 8 pounder via c-section. i just wanted to share my story as a means to help anyway who may be concerned. In addition, i wish nothing but great and healthy pregnancies to all you ladies!!! Any questions, please feel free to ask...of course I have you all the abbreviated version. ↑ |
| Name: sarah sh | Date: May 31st, 2009 5:20 AM |
| @LHS congratulations alot ...i m trying to imagine ur extent of happinesss..... ↑ |
| Name: MM | Date: May 31st, 2009 5:56 PM |
Hi JJ,
How far along are you? I also live in NYC. At my 20 week US my girl's kidneys measured 10mm and 7mm. Given that it was in both kidneys, the severity and the fact that it was so early in the pregnancy, I was told to consider termination -- this was my second opinion. My first maternal/fetal specialist was not that concerned but at 18 weeks she was only 8 and 5 mm. I clearly need a third opinion. What hospital are you going to? What drs do you recommend? ↑ |
| Name: alli2973 | Date: Jun 4th, 2009 11:02 AM |
| LHS, congratulations on your new babay! Thank you very much for sharing your positive story with us. I am also having a girl, so I am really glad to hear of your positive outcome. Unfortuneately I am letting the dialated kidney (4.2 mm on right side found at 19 weeks) pretty much ruin my pregnancy also, I have been consumed with worry that I just can't shake. I know what you mean, I really try to listen to everyone who tells me not to worry, but it is so hard. Anyway, thanks again.... your story definitely put a smile on my face! ↑ |
| Name: sarah sh | Date: Jun 6th, 2009 5:10 AM |
| seems like so many ladies r preg with girls.i m also 34 week preg with a female baby.altogh pylectasis has gone at 30 week scan but i m hell scared...just consuming myself with worry day and night.may almighty bless us all with healthy normal babies.ameen ↑ |
| Name: edithso | Date: Jun 10th, 2009 11:28 AM |
hi to everyone,i am 24 weeks pregnan and i just found out that my baby has both kidneys dilated,4mm ,we are having a baby boy and my doctor states we shoudn't worry about it.This condition is very common in boys and it usually result before birth.
I would like to have the information from newmommy1 regarding her pediatric urologist ,i just want to be prepared just in case my baby will need follow up after birth.W epray to God everything will be ok for everyone. ↑ |
| Name: Kristen | Date: Jun 15th, 2009 4:49 PM |
| Hi I haven't posted in a while but our baby had pyelectasis in the left kidney and echogenic focus (which they dismissed because it wasn't as bright as bone). First it was 4.3 mm than it was 8mm. We went on June 4 (32 weeks) and it was worse. He didn't give me a measurement but said it was "stage 4 hydronophrosis." We have another u/s scheduled for July 6 if I even make it that far because I've been on bed rest since 26 weeks (shortened cervix). I'm dialated to 2. I'm alomost hoping I do go early so they can take care of the kidney. My pediatrician is prepared but we haven't met with the urologist yet. I'll update everyone when we have the baby. I hope everyone is doing well! ↑ |
| Name: Army Wife | Date: Jun 22nd, 2009 4:43 PM |
Hello everyone! My name is Ally. I am 25 and a half weeks. I had a Level 2 ultrasound at 19 weeks. I was told the baby had very mild pyelectasis but that it was very common in boys and that I really ahd nothing to worry about. The doctor said it would most likely clear itself up.
Well, when I went in for a prenatal visit about a month later, the doctor proceeds to tell me that she forgot to mention an echocardiac focus. The ultrasound tech says that she found a spot on the heart. She said that even though my triple screen was negative and that I am young, I have an increased chance of having a child with Downs Syndrome or Trisomy 18 because I have 2 soft markers. Way to freak a pregnant woman out. I was in the worst mood for days because my husband had just left for Iraq a few days before that. I was so upset! She said that I could get an amniocentesis if I wanted to, but that I would have to hurry since I'm almost 26 weeks.
I opted to get the amniocentesis, which is tomorrow morning. I am a little scared about the procedure, but I have been reassured that everything will be just fine. If the baby does have Downs, I want to know ahead of time so that I can get a head start on the services and connect with other families.
Today, I watched my ultrasound video 3-4 times to pay close attention to the kidneys and the heart. I personally didn't see a spot on the heart at all. And the kidneys... it looks like the left one is just fine, but the right one was measured to be 4.2 mm. However, the measurement looked to be off. She measured outside of the kidney as well. I am praying that the finding of pyelectasis and the spot on the heart was an error. Maybe I'm right, or it could be just hopeful thinking.
At the amniocentesis, I am goign to have the specialist re-measure the kidneys and look at the heart again. If she finds that the kidneys look fine, I am considering NOT having the amnio.
Is anyone else experience 2 soft markers? I know that pyelectasis alone isn't really too much to worry about, but 2 soft markers really would freak a pregnant woman out. This is my first child. I have done everything right- from exercise to eating healthy to getting enough sleep...
Everyone, keep me in your prayers! I will update when I get the results. ↑ |
| Name: Army Wife | Date: Jun 23rd, 2009 5:17 PM |
Update:
I am SO glad I got the amniocentesis done. It was pretty quick and pain free. It was slightly uncomfortable when they actually poked the needle in, and my anxiety before was a little high and I started to cry before the procedure, but quickly gained control of myself. Don't let people tell you that an amniocentesis is super risky. The risks have gone down SO much now that we have new ultrasound technology. I was in and out of the office within 30 mins.
I even spoke with a genetic counselor today and got some valuable information. Someone with both fetal pyelectasis and a spot on the heart would have about 4 times greater chance of being born with Downs syndrome. Well, my triple screening test showed that I had a 1 in 3800 chance of having Downs Syndrome, and a 1 in 8000 chance of having Trisomy. Add those soft markers in, and my chance now of having a baby with Downs syndrome is about 1 in 900. I feel good about my odds.
Only thing I have to do now is just wait for my amnio results, which will be in about a week.
I really am glad I read the material online, but some of it really freaked me out. Be wise about what you choose to read. Think about the source of who is writing is. Is it written by a valid medical specialist that is known in that area or is just an opinion by someone else? Remember, knowledge is power. Get the amnio done if you feel that you have enough soft markers and risks to do it. I'm glad I did. ↑ |
| Name: Army Wife | Date: Jun 23rd, 2009 5:20 PM |
Oh, and I forgot to mention..
The baby still has fetal pyelectasis and a spot on the heart. The doctor said the spot on the heart will never go away. It's just that it will be masked as the baby grows up due to heart muscle. It will not affect the condition of the heart any way. That made me feel so much better.
The baby has fetal pyelectasis. 4 mm in the left kidney and 5 mm in the right kidney at 25 weeks. If it is around 7 in the 3rd trimester, they say that I should not worry about it and that it will probably be fine.
If it gets worse, it can be fixed by a simple procedure after birth and that it is very common. It would never result in kidney transplant or dialysis. Again, a big relief.
Hope that helps! ↑ |
| Name: Robyn | Date: Jun 23rd, 2009 10:44 PM |
Reading all of the positive stories here helped calm me down during my pregnancy, so I thought that I would share my good news as well.
I found out at my 19 week ultrasound that one of my baby's kidneys was 7 mm dilated. My doctor told me that it was a commom ultrasound finding and not to worry about it. At my 34 week ultrasound, the kidney was still 7 mm dilated, so I decided to search the internet for info and completely freaked myself out. My husband and I didn't want to know the sex of our baby, so when I found out that this condition is 3 times more common in boys, I felt like the surprise had been ruined. I was also terrified that my baby would end up with downs.
Needless to say, the info that I read online really upset me and it riuned the end of my pregnancy. However, I'm extremely happy to say that I gave birth to a beautiful and perfectly healthy baby girl on June 17th. She is scheduled to have an ultrasound on her kidney on Thursday, but the doctors don't think that I should have anything to worry about.
Please don't let the info that you read scare you or ruin your pregnancies. It seems like the majority of the babies that are born are healthy and doing well. ↑ |
| Name: @army wife | Date: Jun 24th, 2009 9:01 AM |
good luck.our prayers r wid u.do let us know bt ur result of amnio.
@ROBYN
congrats alot.......... ↑ |
| Name: sarah sh | Date: Jun 24th, 2009 1:07 PM |
| sorry i forgot to write my name in above post:) ↑ |
| Name: MM | Date: Jun 26th, 2009 9:16 AM |
Hi JJ (or anyone else with severe bilateral hydronephrosis),
How you are doing? Can you tell me how your baby's numbers progressed during the pregnancy? You mentioned that the kidneys were large at 20 wks, but didn't give numbers. My baby's numbers keep getting worse and we're obviously scared. We are trying to extrapolate how bad this will get before birth. At 16 weeks she was 5 and 3. At 18 weeks 5 and 8. 22 wks 6 and 9. 24 wks 8 and 13. I have seen Dr. Poppas (Cornell) and Dr. Stock (Mt. Sinai). Both think she will most likely need surgery in one or both kidneys to correct the obstruction. They think the chance of kidney transplant is unlikely but we are still worried that the numbers are getting so bad so quickly that maybe this is a real possibility. FYI, my amnio was normal and there are no other issues -- bladder, etc. are all normal. The only issue is the kidneys. The overlying cortex on the larger one appears thin now (is that a concern?) but there is no evidence of cysts or any other issue. Amniotic fluid is also normal. Any comments would be appreciated. ↑ |
| Name: armywife | Date: Jun 26th, 2009 11:40 PM |
Hi MM-
It could be a number of things- I am still waiting for the results from my amniocentesis.
I have been told that it could range from being unable to filter out urine properly to just being a very minor thing that can be fixed after delivery. Very rarely will it lead to surgery. My doctor said that most babies that have this condition usually pee it out as soon as they are born, and the pressure is relieved. They do an ultrasound on the kidneys a couple weeks after birth.
Hope this helps. ↑ |
| Name: Kristen | Date: Jun 27th, 2009 3:18 PM |
| Armywife - I can't wait to hear your amnio results. Our baby has both of those markers too but we did not have the amnio or any bloodwork screening so have nothing to go by. Good luck to you! ↑ |
| Name: ArmyWife | Date: Jun 27th, 2009 4:03 PM |
How far along are you? Why did you not do the screenings or blood work? They are so safe and informative.
I should find out the results soon. I am getting very anxious. ↑ |
| Name: amy | Date: Jun 28th, 2009 1:31 PM |
| My son is now 19 months and by gods grace he is healthy and the ultrasound had nothing to show..please dont go ahead with the anibiotics if the doctors prescribes ur babies they are very harmful..in the end in 99.9% of the cases it is nothing and its all physiologic..at 8 days u might be giving ur kids something they should not be having.. ↑ |
| Name: To Amy | Date: Jun 29th, 2009 2:39 PM |
| I have not heard anything about antibiotics. Are you talking about after the baby is born? ↑ |
| Name: ArmyWife | Date: Jun 30th, 2009 4:56 PM |
Just got my results from the amniocentesis back. The baby is 100% normal. Thank God- my prayers have been answered!!
The spot on the heart will never go away....it's very common, and does not pose any health risks.
As far as the Pyelectasis, I will just have to wait and see if it resolves itself while in the womb. It could be caused by a number of things. If it doesn't go away, the baby will have some ultrasounds after birth and possibly undergo surgery.
I'm just so thankful that the baby is alright. And I'm so glad I got an amniocentesis. Now I can relax and enjoy my pregnancy! ↑ |
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