| Name: JJ | Date: Apr 28th, 2009 7:57 PM |
Hey Leanne! Thank you so much for your reply . . . I went back and read your postings.
So happy your baby is doing well!
Do you remember how large his kidney had gotten in millimeters before birth?
How old was he when they ended up doing the surgery? ↑ |
| Name: Kristen | Date: Apr 29th, 2009 7:19 PM |
| Hi everyone I've been reading these posts since I went in for my 26 week u/s when we got the news that one of our baby's kidneys was dilated to 4.3 (4 is the cutoff at my office). We had a 20 week u/s that showed the bright spot on the heart (echogenic focus)but after another u/s the doctor ruled it out because it wasn't "as bright as bone." But both of these are markers so I'm freaking out! Also the baby is only measuring at the 37th percentile. We are not doing the amnio and I didn't have any of the bloodwork. Please keep posting your stories they are very comforting to read. ↑ |
| Name: Novlina | Date: Apr 30th, 2009 6:55 AM |
I'm in the 26th week, and the latest USG has shown bilateral Pyelectasis.
My question is to the moms that have delivered.
Does the baby pass urine normally. Are tubes to be inserted to help trhe baby pass urine. ↑ |
| Name: Allison | Date: May 1st, 2009 9:17 AM |
| Kristen, did they find pyelectasis on your 20 week ultrasound? Reason I ask is because many medical professionals consider 4mm the cut off between 16- 20 weeks, and 5 mm between 20-30 weeks. 4.3 mm at 26 weeks doesn't sound so bad.... are you scheduled for another follow up ultrasound? I understand what you are going through, as we too opted not to have an amnio. Try to keep positive and trust that everything will be okay. ↑ |
| Name: newmommy1 | Date: May 3rd, 2009 11:07 AM |
just wanted to post an update on our little boy for everyone. I first posted in August 2008 and last updated in November 2008. I'll give you a bit of background.
We found out at 36 weeks pregant that he had dilated kidneys on both sides (14mm and 9mm). He was born in July and an ultrasound when he was 1 days old showed dilation on both sides still. We did the VCUG at 5 days old and it showed no problems wiht reflux. At this time we were seeing a pediatric kidney doctor. She did an ultrasound at 1 month that showed significant dilation on both sides (about 14 or 15 mm); at that point she wanted to do the renal scan which required dilation when he was 2 months old. We asked if we could get another ultrasound at 2 months to see if the dilation had decreased so we didn't do an unnecessary test with sedation. She said ok. Dilation same at 2 months old and had actually decreased at 4 months old. He had another ultrasound at 8 months old which showed that the dilation had increased some so she referred us to the pediatric urologist who specializes in this area. We saw her in beginning of April; she recommended renal scan. That came back to show his kidneys were functioning normally (52% one side and 48% on other -- normal numbers) but he definitiely had a UPJ. She scheduled him for surgery on April 29.
The surgery went beautifully; he had to have it on both sides She was able to remove the kink on both sides. They kept him for 24 hours to make sure everything went well and he came home on April 30. It is such a relief that the surgery went well.
If anybody gets to the point where their child needs surgery, I'd be happy to give you information about our surgeon. She has done over 1500 of these surgeries and has had only 1 child have a recurrence at 9 yo which she fixed again. If you would like to know her name, please reply on this website with your email address and I"ll send you her name through email.
I wish all of you the best! This is a very treatable condition!!!!
This website has been such a source of support; I want to thank all the other moms and dad out there who have shared your stories! ↑ |
| Name: kristen | Date: May 3rd, 2009 11:26 AM |
| We had another ultrasound on Thursday (28 weeks) and the dialation had increased to 8mm :( so I'm having another u/s at 33 weeks (June 4). I guess we'll have to see then how it is. ↑ |
| Name: sarah sh | Date: May 4th, 2009 12:24 PM |
| hey kristen.....wat abt the grwth centiles of ur baby now? i also had my scan scan today and dilatation remains 6 mm as it was at 18 week.....i m praying for healthy baby for all of u and for me tooo...but literaly it is a torture.....MAY ALLAH bless us with healthy babies. ↑ |
| Name: sarah sh | Date: May 4th, 2009 12:26 PM |
| hey kristen.....wat abt the grwth centiles of ur baby now? i also had my 29 weeks scan scan today and dilatation remains 6 mm as it was at 18 week.....i m praying for healthy baby for all of u and for me tooo...but literaly it is a torture.....MAY ALLAH bless us with healthy babies. ↑ |
| Name: JJ | Date: May 4th, 2009 5:55 PM |
newmommy1, thank you so much for your post!
I am now 31 weeks now and have another ultrasound to follow-up on dilation measurements and fluid level tomorrow morning. As of week 29 one kidney was dilated to 16mm, the other about 7mm. I was told that my little guy would probably end up needing surgery after birth.
What area do you live in? If your Dr. is anywhere close to me, I would love her information . . . I live in NYC. ↑ |
| Name: kristen | Date: May 5th, 2009 10:53 AM |
| sarah - they didn't do an overall scan on the baby, they just did a quick check of the kidneys. They won't do another ultrasound until 33 weeks which is June 4. ↑ |
| Name: sarah sh | Date: May 6th, 2009 4:49 AM |
hi all
can any one tell me dat bright spot on heart of fetus is comman in asians and 1 in 3 asian babies have it normaly.i m an asian and searched on net and its there all over dat its comman in asian mothers and not considered as a soft markr in them?any one know abt it.thanks ↑ |
| Name: angela | Date: May 6th, 2009 9:19 PM |
| I had just joined the forum, after coming from the doctor’s office. I had my 19 weeks and 5 days ultrasound and it reveled that my baby (girl – I haven’t seen too many girls mentioned here) has a right kidney slightly enlarged measuring 4.2mm and left kidney measuring 4.9mm. I am 39, and my doctor told me that doing amnio is a good way of knowing for sure if there is any chance of down syndrome to be involve. I had down syndrome screening at 12 weeks (ultra sound, blood test) and it put me at risk of having baby with down syndrome at 1:265 (not too bad). But the kidney problem lowered it to 1:192. The doctor told me that chance of having miscarriage after amnio is around 1:1000. I chose to do the amnio and had done it today. Because I am almost 20 weeks she had requested the lab to do 3-5 days test (not two weeks, like it usually takes). I should have the results soon. I am very scared, this baby is wanted. I don’t know what I am gong to do if the result will show presents of the down syndrome. Did anyone have made a decision of terminating the pregnancy, because of that? ↑ |
| Name: alli2973 | Date: May 7th, 2009 5:15 PM |
Hi Angela,
I too am having a girl. At my 19 week ultrasound the right kidney was 4.2. I had a follow up ultrasound at 27 weeks and I was told everything was in the normal range- the doctor didn't even give numbers, just said there is no reason to come back for another ultrasound. Nonetheless, at 31 weeks I still worry quite a bit. We chose not to have an amnio, now I sort of regret it (just for peace of mind sake) because the worrying has really put a damper on my pregnancy. The doctor quoted a risk of 1:500 for miscarriage with the amnio, I know that rate varies by hospital or practice. Best of luck and please let us know how you make out with the results. ↑ |
| Name: sarah sh | Date: May 8th, 2009 9:28 AM |
| waiting update from angela..... ↑ |
| Name: angela | Date: May 8th, 2009 2:49 PM |
I might have Fish Test results today in the afternoon. Fish Test is fastest test available for d/s. It takes around 72 hours to get the result. I can’t find anything to do that will keep me away from thinking about the results. Usually I love the weekend – this coming one I hate. If the result will not be ready today I will have to live through this weekend without knowing the results. Yesterday I went to Genetic counseling. A lot of women here said that it helped them. Didn’t help me. I browsed this whole chat before the appointment (plus some other medical websites as well) and I knew every single thing that consular had told me at the appointment. I felt much better going through this chat, because it is more feed back, more women who went through this, more support, much more understanding of your situation, then talking to the Genetic counselor. May be I had expected more reassurance from the counselor’s side. But she couldn’t give me that. There is the chance of d/s and nothing anybody can do about it. Only amnio will tell.
Alli: I am sorry for asking, but how old are you? My age - 39, is huge disadvantage in this kind of situation. My doctor had told me that if not my age then she wouldn’t even mention d/s in this situation. Only one soft marker (enlarged kidney) is not a problem, if your are younger.
Sara sh: thank you Sarah ↑ |
| Name: angela | Date: May 9th, 2009 1:49 AM |
Hooray!
I like the weekend again. The result for the FISH test is negative. Everything fine with chromosome 21 (d/s). I still have to wait for the results for Chromosomes 18 and 13, but it is much lower probability of having it (1:7400). I will keep posting the results. ↑ |
| Name: angela | Date: May 9th, 2009 3:20 AM |
To Alli2973
Alli, I had read all of the posts in this chat. Everyone who had mentioned that the kidney went back to normal before week of 27-32 did not have d/s. And none of them had problem with kidney being enlarge again later in pregnancies. I found only two posts with ds outcome starting from the beginning 2005 (it is almost 4 years to today’s date). I am pretty sure you have nothing to worry about. Please enjoy the rest of your pregnancy. Everything will be fine! ↑ |
| Name: sarah sh | Date: May 9th, 2009 12:56 PM |
| congrats angela... i can imagine ur peace of mind now...be relax and enjoy ur kicks.i m praying for all of us dat MAY ALMIGHTY bless us with healthy babies. ↑ |
| Name: Evalyn | Date: May 11th, 2009 5:57 AM |
Hi. I had my sons scan at 20 weeks and was told that his kidneys (both) were dilated.
I then had another scan around 30 odd weeks. It still showed dilation in both kidneys , i think 4mm in one and 6mm in the other...
We had to have a scan at six weeks and he still had that. Our son was put on anitbiotics ..which we had to decide if we wanted to give it or not ,as my husband was anti anitbiotics. We finally started giving it....it was quite stressful for 3 months but we kept going and kept praying...We were told that it hasnt gone any worse but hasnt gotten better so we had to see the specialist.
We did and around 3 months we had another scan and they said that they kidneys have gone back to normal..Thank god...
We were so worried but the doctor did say that it was common with boys and that if it is a small amount of dilation then it usually self corrects.
I hope this helps...Please email me if you would like further infor...es_chandra@hotmail.com
God bless ↑ |
| Name: alli2973 | Date: May 11th, 2009 5:04 PM |
| Angela, that is wonderful news regarding your FISH test results, I am very happy for you! I bet you are so relieved. Thank you for the encouraging words, I also have read all of the posts here (twice) and it definitely has made me feel more positive, but I still can't help but worry sometimes. I really need to stop reading other stuff on the interenet! To answer your earlier question-- I just turned 36 about a month ago, so I also have that advanced maternal age label to deal with. My Dr. told me that if I were 21 he wouldn't have even mentioned the kidney thing! Question for you... did your Dr. mention anything about having a girl while pyelectasis is more common in boys? ↑ |
| Name: angela | Date: May 11th, 2009 6:51 PM |
| Hi Alli! I am relieved, but not 100% yet. Still waiting for next Monday to hear the rest of the results on Chromosome 18 and 13. But I feel definitely much better. Alli, peri did mention that it is mostly common in boys, not girls. But when I went to Genetic counseling, the counselor told me that it is not a huge difference. But I think I haven’t seen any post about girls having a problem after the delivery or girls having surgeries. What I have seen are mostly boys, who had surgeries. Did you see any girls mention? ↑ |
| Name: Nicole R | Date: May 11th, 2009 6:54 PM |
I was hoping to see an update from JJ.... any word on your latest results?
I went in Friday for what was supposed to be my "final" (before birth) ultrasound to monitor our baby's kidneys (1st visit had fluid in both kidneys - 3.0 & 3.5 mm & then second visit had 10.5 in one kidney & 0 mm in the other-- felt GOOD about this since a human can survive with 1 kidney-- but Friday found out we have 9.5 mm in both kidneys) & now we have to go in yet again in 1.5 weeks to see how the kidneys are looking. If there's a significant increase they'll induce labor early This, to me, is a BAD sign but my husband seems to be blowing it off as no big deal????Having to come back AGAIN & having the threat of early labor so that they can "begin working on the baby's kidneys" (as the doctor put it) is NOT good news whatsoever.
I am trying to take this in stride but it has definitely taken the wind out of my sails a little. Everyone just wants a healthy baby & it's discouraging when you fall in that small percentage who does not have one.
I also have a family member who is an infant kidney specialist & she mentioned dialysis & transplants & the 50% survival rate of this. I don't think we're in that ballpark yet but it's so scary to think your baby has a condition which could take its life.
Anyone with Bilateral Pyelectasis in a moderate to severe range, I'd like to hear your thoughts & stories. ↑ |
| Name: alli2973 | Date: May 12th, 2009 10:53 AM |
| Hi Angela! I have not seen any postings about girls having problems after birth. Going back through the postings there are a fair amount of people having girls, but not too many recently. I guess I am just wondering if it means anything different or any increased risks if diagnosed in a baby girl versus a boy? I tend to over analyze things, so I really should just accept what the Dr. told me and pray for a good outcome in July. Do you have to go back for follow up ultrasounds? ↑ |
| Name: angela | Date: May 12th, 2009 2:43 PM |
Alli, yes. I will have follow up US in 8 weeks in the end of June. But I am not too worried. Even if the kidney will be still dilated, I kind of ok with it. I am still worry more about the rest of the amnio results. Kidney problem can be fixed, DS – not. If you look from that position then everything looks much, much brighter. And I think the positive and reassuring point is that I did not see any of the posts with girls having problems with kidneys after the birth.
Alli don’t worry that you didn’t do the amnio. I had a risk of having DS 1:265 I did not even consider amnio. I was offered to do it, but rejected. If not the kidneys I would have a wonderful pregnancy time. But with kidney it went down to 1:192. I totally freaked out. Did you go to the Genetic Counselor? Did they recalculate the risk of having DS with the kidney involved?
And again. Everyone here who had mention that the kidneys went back to normal by week 27-32 did not have DS and did not have kidneys problems after birth. It is very, very reassuring.
I will keep posting the follow up on amnio and u/s, but I think you will deliver before I will have my follow up u/s. I will wait for an update form you. By the way is it is your first child? ↑ |
| Name: alli2973 | Date: May 12th, 2009 3:59 PM |
| Hi Angela, I did go to a genetic counselor, and they said that the kidney did not alter my risk. So as far as I know they put the numbers in the "computer" to recalculate my risk, but it didn't change. That sounds odd to me because everyone else had an adjusted risk. I think the Dr. said it probably didn't change because the dilation was minimal at 4.2mm. Unless it was also because only one kidney was affected? I don't know. Thanks again for your support and please keep us posted. Yes, this is my first child, I am due July 7th. Take care and good luck! ↑ |
| Name: JJ | Date: May 14th, 2009 8:15 AM |
Hey Nicole R!
How many weeks are you?
I think you read my posting from April 25th. Generally, measurements of even up to 12mm rectify themselves sometime after birth and monitoring only (not surgery nor early delivery) is necessary in these cases. Once you get above 14mm, the likelihood of your baby needing surgery sometime after birth is more likely. And after birth means several months not several days.
In terms of 'early delivery' . . . . my baby's larger dilation is 16mm and his smaller dilation is 8mm and they are just continuing to check the dilation measurement every other week (they don't even bat an eye @ the 8mm one, the 16mm is the one the are monitoring and think may possibly need to be addressed after birth). Even still, only if it got CRAZY HUGE, like over 30mm or 50mm (I can' remember which the Maternal Fetal Medicine Dr. said) would they consider an early delivery and at this point it is nowhere close.
However, the other thing they are monitoring in addition to the dilation size, is the fluid. If the fluid gets low, they would want to deliver early. If the fluid gets low it means there is a possibility of kidney damage in the womb, so the benefits of delivering early out-weigh the risks.
I obviously an not a Dr., but I have done a lot of research and sought out renowned Dr.'s in the field in New York City. I highly recommend that you seek a 2nd opinion before you allow anyone to deliver you early based on the numbers which you have indicated which are both below 10mm and assuming that you fluid level is still good.
I have my first visit with a pediatric urologist this morning (which was recommended by the maternal fetal medicine specialist to discuss the situation and possible courses of action after birth. I will certainly post back about what I hear. ↑ |
| Name: bw | Date: May 14th, 2009 8:39 AM |
| Last year when i was 20 weeks pregnant I also found out that my baby boy had left sided pyelectasis (on his left kidney). To cut a long story I worried myself sick for weeks that he would have DS (the pyelectasis was the only "soft sign" present) or ongoing problems with his kidneys. I ended up going to a genetic counsellor as I did not want to have an amnio done. She told me that in all her years as a genetic counsellor she had never come across anyone whose baby had isolated pyelectasis and ended up having down syndrome. My obstetricians also said the same and that I should "not be concerned about this at all." I took their advice and decided to put it out of my head (as hard as it was). To put it in perspective I realised that there are so many things I could possibly worry about in my life and that this was probably one worth worrying about. My baby boy was born healthy, does not have DS and no problems with his kidneys-as the paedeatrician expected the problem rectified itself within 4 months of my baby's birth. ↑ |
| Name: bw | Date: May 14th, 2009 8:46 AM |
| RE: My previous post i meant this was " not a problem worth worrying about" not the other way around as I accidentally wrote. Also good luck to you all and please try not to worry-every health professional I spoke to about this (and there were a few), told me not to worry and that this was a VERY COMMON and MINOR occurrence that really just indicated a developmental variation. ↑ |
| Name: angela | Date: May 14th, 2009 2:12 PM |
Hi Alli!
I got the rest of the results of amnio just now. Hooray! No DS, no any kind of problems with other chromosomes! I actually panicked, when I got the call. They told me that I will have the results only next week, but called today. The first Genetic counselor who called me last week right away started with the fraise: “I have a good news for you”. It was easy. This time it was another counselor who called me with the rest of the results. And she started with where she is calling from, then her name, then she asked my name and only then she told me that she has a “Good news for me”. But before she got to that fraise, I kind of was in agony. But thanks God everything is fine and I did not add any discouraging results/outcomes to this chat. If your baby has only one soft mark – pyelectasis – that does not mean at all that the baby has DSl!!! My amnio – one more prove for it!!!
Alli and everybody else please enjoy your pregnancies. ↑ |
| Name: alli2973 | Date: May 14th, 2009 2:22 PM |
Hi Angela!
That is awesome news, so happy for you. Please enjoy the rest of your pregnancy and keep us updated on things, I will do the same. ↑ |
| 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 ↑ |
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