| Name: Marty | Date: Nov 21st, 2007 2:46 PM |
Elizabeth THANK you so much for the post. Last time I went to the Neonatologist I was 33 weeks and they where both at 6mm I have my last scane this coming Wed I will be 37 weeks and C section to follow 2 weeks later.. I am not as scared anymore and I pray for myself and all of us on this board. May God bless us with healthy babies...
Happy Thanksgiving to you all!
Marty ↑ |
| Name: RT | Date: Nov 21st, 2007 4:11 PM |
Thank you to everyone who posts their stories...it is nice to have some comforting words from other mothers who have been there and who are going through this. I feel like we can all relate to each better than we can with people who are not going through this.
To all us mothers...Happy Thanksgiving...may we all be blessed with healthy babies... :) ↑ |
| Name: MF | Date: Nov 23rd, 2007 4:06 PM |
| Hi Everyone, I'm 22 wks, we got our U/s result saying borderline pyelectasis, 4 mm. I'm an anesthesiologist and being an MD does not help. I'm still freaking out, if anything it might be worse. I have full access to all the medical literature and I've read alot of it in the past 24 hrs. I agree with RT totally, its not the kidney problem that really worries me, its the DS. My quad screen was negative and there are no other soft markers on the scan which helps, I'm from Canada and they won't do an amnio unless there are other signs so we have no choice but to wait and see. I'm praying for all of you. ↑ |
| Name: Bree | Date: Nov 23rd, 2007 6:11 PM |
Hi MF!
Can you believe how much we moms can worry?!
I was wondering what you can share with us on the research you have done? If you all are anything like me I have already read everything there possibly is on the internet (and who knows how much of it is reliable). It would be great to hear any insight from you.
Thanks!
Hope you all had a happy turkey day!!
Blessings! ↑ |
| Name: Sarah | Date: Nov 24th, 2007 4:19 AM |
| hello everybody...hope everyone had a great thanksgiving!!!! I was just thinking that we all use this site to voice our concerns and our worries, which has been wonderful...just knowing that there are other people going through the same emotions and having other people to chat with about all of this has been a life saver for me...but i was thinking that we should also share our joys and the "happy" less stressful parts of our pregnancy's too...does anyone have names picked out???? i think we are going to name our little blessing Gianna Elizabeth...i would love to hear all of your baby names and stuff too : ) hope to hear from you all soon!!! *blessings to all* ↑ |
| Name: RT | Date: Nov 24th, 2007 6:38 PM |
| Great idea Sarah! Maybe if we focus on the joys and positives of all of this we will put our anxieties at rest...We are going to name our little girl Rachel Elizabeth...We have a girl right now and she wants a baby sister and our little boy wants a baby brother...go figure...they do not know that we know what we are having. We are going to have them open up a gift on Christmas which will tell them the sex of the baby and Santa is going to bring a stocking of goodies for our baby...I'm hoping this puts some more joy in our lives right now... ↑ |
| Name: MF | Date: Nov 25th, 2007 12:40 PM |
Hi Bree
First of all, I am by no means an expert in this area, pyelectasis is not discussed in medical school not even as a soft marker for DS, and I'd never heard about it until 4 days ago, but here's the highlights of what I've read. The best study I've read was a really big (by medical standards) study of 25000 women in the UK. They were all low risk meaning that they had no other reasons for any abnormalities in their pregnancies (alot of the other research in this area is on high risk women who would be expected to have DS or other chromosomal abnormalities for other reasons) This study found that the incidence of DS in this group was low, 1 in 305 cases of isolated pyelectasis. There are a couple of reassuring points to take from this the first is that based on their numbers there is 99.7% chance that a baby with isolated pyelectasis will be normal (no DS) and only 0.3% chance that it will have DS. The other major point is a statistical thing, we are dealing with a rare event (isolated pyelectasis and DS), so there is alot of uncertainty as to whether the 1/300 number really stands-up, it could be for example if the study was repeated that the first case of DS doesn't appear until 1/500 or 1/1000 or whatever number you pick, until an extremely large study is done like with 100 000-1 million women they aren't truly going to know if there is an actual association between pyelectasis and DS. Studies this large are expensive a study like this is unlikely to ever happen. The difference in the number of u/s scans that people get may relate to the healthcare system they are in, Canada vs. US, public vs. private. Ultimately, the u/s really only tells you whether your baby will need to be followed by a urologist after its born, it doesn't alter your risk of DS even if the pyelectasis goes away. If the dilation is ]10mm then the baby needs to be followed, but the kidney problems are easy to fix, the DS is not fixable or treatable. Hope this makes sense and helps some of you. To me the support/knowledge of having so many others going through the same thing is reassuring at least that we are not alone and I thank you all for that. ↑ |
| Name: Sarah | Date: Nov 25th, 2007 1:24 PM |
MF
thank you for the info...i am sure we all apprciate it...I was told by my doctor on friday that i should not worry anymore then a women who has never heard of the word pyelectasis...he said legally he had to tell me, he said otherwise he wouldnt have even mentioned it....and once again i was told that the stress of this all is worse on the baby and the pregnancy (not to mention me) then the pyelectasis is...but i i have also said before us as moms already have the "normal" pregnancy worries so adding anything else on top of that seems to push us over the edge...and RT, i Love the name!!!!! , and that should be a great christmas surprise!!! (well for your daughter at least) *smiles* God Bless ↑ |
| Name: MF | Date: Nov 25th, 2007 2:52 PM |
Sarah,
I agree with your doc based on the stats its not something to worry about, my doc didn't even mention the risks other than urologic. I found out after I'd seen her when I looked it up what the risks of DS were. I think when an MD tells you something like that and, just tells you not to worry, some people can just trust that it will be ok, and some can't. I think that it is partly the MD's responsibility to help you get through the anxiety that all this causes and as a profession we are not very good at that.. ↑ |
| Name: Bree | Date: Nov 25th, 2007 3:13 PM |
yes thank you MF for the info.
I spoke with my husband's cousin who has a little boy with DS and she said she has never even heard of pyelectasis...just thought I would pass this on to you all.
Have a great day!! ↑ |
| Name: Stephanie219 | Date: Nov 29th, 2007 8:39 PM |
Marty- Just checking in on you to see how things were going? Did you say that you are due soon???
As far as our son, well he is doing great. Right on schedual with his development and stuff. He is already smiling sometimes. And he is peeing just perfectly. Things are good!!! ↑ |
| Name: Marty | Date: Nov 30th, 2007 12:28 PM |
Hi Stephanie!! I have been looking for you,.. Everything is good. I went to the Neonatologist on Wed and kidneys are exactly the same as last time 6mm on each side so if they are under 7mm no reason to check no more. Seems he will be born with NO Pyelectasis. Just as everyone said here they started going down and he learned how to pipi!! My C-Section is in 16 days and now Im in the countdown.. I will let you know that everything is good very very soon. Im still so scared of the whole DS thing. Some days I cannot stop thinking about it.. I had another 4D done yesterday and have not stopped looking at him. God what we mothers have to go through. However I am very much in love with my little baby already but just PRAY AND PRAY that he is healthy. Im so glad everything is perfect with your bundle of joy... God Bless you and all the other girls on here and their babies, May we all have healthy babies and NEVER have to think about Pyelectasis again.
Marty ↑ |
| Name: Bree | Date: Nov 30th, 2007 2:21 PM |
Congratulations Marty on the countdown. So very exciting. Sometimes it feels like the day will never come huh?!
Please keep us all posted on the arrival of your baby! Hoping for a smooth and quick recovery! ↑ |
| Name: Marty | Date: Dec 1st, 2007 10:01 PM |
Thank you Bree it has been long and I am super swollen so the time is near. I will however keep you poster.
Love Marty ↑ |
| Name: Sarah | Date: Dec 3rd, 2007 6:59 PM |
| Hi girls...I just wanted to give a happy update...i had a doctors appt. this morning and the doctor did an ultrasound and the babies kidney have totally cleared up!!! so no pyelectasis anymore!!! which i was thrilled about,,,although it still doest change the fact that the soft marker was there...but it does make me feel a little better....blessings to all ↑ |
| Name: Bree | Date: Dec 3rd, 2007 7:45 PM |
| oh Sarah that is fantastic news. Thanks for sharing!!!! I am curious...how many weeks are you? I have an ultrasound for Thursday so I will post an update then. ↑ |
| Name: Sarah | Date: Dec 3rd, 2007 10:44 PM |
Hi Bree,
I am 23 and a half weeks...and i will keep you in my thoughts and prayers during your ultrasound!!! looking forward to your update!!! ↑ |
| Name: Lisa | Date: Dec 4th, 2007 2:00 PM |
| I wrote on here back on October 11th about my 20-week ultrasound and the pyelectasis in both of my son's kidneys. My AFP screening was normal. Well, I just had my 28 week follow-up ultrasound and his kidneys have gotten worse. And they saw a spot in the heart this time too (which wasn't there before, or noticed before). This was the news I feared the worst. I started crying right there on the ultrasound table. I haven't gotten an amniocentesis, and I'm not going to because of the risk to my son. But I'm completely scared, and feeling devestated. My son is due February 20th, so I guess I'll have to wait and find out then. But the stress of not knowing is awful. I'll let you all know if he has Down's or not when he's born. ↑ |
| Name: RT | Date: Dec 4th, 2007 3:42 PM |
Hi everyone,
I had an appointment today with a different OB dr. I asked him about the kidney issue and he was so laid back about it...he said that normally by 32 weeks it is cleared up and if not it's cleared up by birth. I did not ask him about the DS link b/c I just had to stop questioning everything b/c the stress of this kills me if I think too much about it. A friend of mine is an OB and she said that to be honest many DS babies are not even picked up on ultrasound. She said you can look into everything as a marker of some sort of something that can be wrong. Lisa, I have seen the heart issue on some other websites combined with pyelectasis and the baby was fine. I'll see if I can find the website link. In fact the heart was fine by the next visit.
I have to wait till 31 weeks to get my ultrasound and I'm 24 weeks. Pretty much the end of Jan. at this point. Atleast with Christmas the month of Dec. will go by fast. ↑ |
| Name: Sarah | Date: Dec 4th, 2007 8:23 PM |
Lisa,
I am sorry to hear about your ultrasound, but just so that you know i have done tons of research and even with people who have had both soft markers that you have not one of them that i saw ended up having a baby born with downs. I know it is hard but try to keep your head up, I will be praying for you!!! ↑ |
| Name: RT | Date: Dec 4th, 2007 10:12 PM |
Sarah,
Thanks for your update and I'm glad the baby is doing well! Keep us all in your prayers... ↑ |
| Name: Sarah | Date: Dec 5th, 2007 12:50 AM |
RT,
thank you...unfortunantly just because the kidney issue went away doesnt mean the DS chances go down : ( but it is still good news...I absolutly will keep everyone in my prayers...god bless ↑ |
| Name: Crissy | Date: Dec 5th, 2007 7:34 AM |
| Hello everyone. I've been reading the posts on this forum and have been greatly encouraged. At my 20 week u/s they found a white spot on my babies heart and both kidneys 6.9mm and 7.2mm. My dr didn't mention anything about being soft markers for ds, but I came home and researched online and now I'm scared to death. I'm going for a level II u/s and genetic counseling. I have 4 other children who are all healthy so I'm hoping that these markers turn out to be nothing. Thank you all for your encouraging posts. It does help to know that there are people out there in the same boat and things turn out fine. ↑ |
| Name: RT | Date: Dec 5th, 2007 10:43 AM |
HI Chrissy,
It's amazing how we all found this board and can share our struggles and concerns with this. I think for people who are not going through this it's hard to understand and is to say that everything will be ok...which I'm hoping is the case for all of us. We are all going to make it through this and keep in touch through our appointments... ↑ |
| Name: Bree | Date: Dec 5th, 2007 1:33 PM |
I agree it is nice to "talk" with others going through the same thing because we can relate. I don't know about anyone else but no matter how hard I try it is all so consuming and to be honest it isn't the pyelectasis that I worry about so much but it is the DS factor. I hope that doesn't sound bad.
On a happy note my little guy is moving so much and the kicks and movements are so much stronger the past couple days. That is a happy time :).
Oh I also wanted to share that my aunt is an OB nurse and she has now asked 3 different midwives about pyelectasis. All 3 have said that it is a fairly common finding and usually clears on its own. And they all said they wish docs. didn't link it to DS. I was reading something the other day that said Doctors must tells us these things because if they didn't and the baby was born with something"abnormal" and we came back and asked to see the film from the ultrasounds there could be a problem if they never mentioned the findings. Makes sense I guess.
I will update tomorrow after my ultrasound. ↑ |
| Name: Marty | Date: Dec 5th, 2007 3:38 PM |
Hello Girls well I have 12 days to go. The countdown is ON. I cant wait to meet my little boy. His Pyelectasis cleared up and will need no care after but still me worried. We had no other marker and baby looks great. I pray for nyself and all of us going through this. I promise to post as soon as I return home with some very good news. Lots of blessings.
Marty ↑ |
| Name: Sarah | Date: Dec 6th, 2007 12:03 AM |
Marty,
i am do happy for you!!! I cant wait for yor next post!!!! you are in my prayers!!!!! ↑ |
| Name: Bree | Date: Dec 6th, 2007 4:09 PM |
| Just wanted to post an update as we just got back from perinatal. Baby boys right kidney went down to normal range and the left kidney went from 5.9mm to 5.8 mm today. So we are so thankful for the progress and will return again at 30 weeks to check things out again. Blessings everyone! ↑ |
| Name: Sarah | Date: Dec 7th, 2007 12:56 AM |
Bree,
yayayayaya!!!! that is great news!!!! I am glad that your little man has improved!!!! thats wonderful!!!!
*blessings to all* ↑ |
| Name: Crissy | Date: Dec 7th, 2007 3:49 PM |
| Sarah, I read in earlier posts that you researched having two soft markers and not one of them ended up with ds. Could you share with me what you've read? I have a level II scheduled on Wed. but I'm a wreck worring about it. Thanks in advance. ↑ |
| Name: Bree | Date: Dec 7th, 2007 4:45 PM |
Crissy-
I wanted to share with you what the perinatologist told me yesterday. We were discussing the different soft markers ofr DS and she said she wouldn't be surprised if in 10 years 2 certain markers were not even considered markers anymore. The markers she was referring to were the spot on the heart and choroid plexus cysts. Hope this helps you. ↑ |
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