Fluid Found Around Baby S Heart Down Syndrome

14 Replies
Athena - November 3

I was told about a month and a half ago that my baby had a 1 in 2400 chance of having Down Syndrome...after taking the triple marker test. Last Wednesday I found out through a 4D ultrasound that the doctor saw fluid around my baby's heart. Because of the fluid, my chances of having a Down Syndrome child went from 1 in 2400 all the way to 1 in 250. I had an Amnio done, because waiting another 4 months to find out seemed too long and I'm stressing enough as it is. I am still waiting on the results and should hear something tomorrow or Monday. This has been the longest week of my life, and it would sure help to hear if anyone has gone through the same thing. Thank you for your time.


Lisa - November 5

I went through the same thing and my daughter turned out just fine. Shes now three years old and I named her Katie.


Athena - November 7

Thanka Lisa....I appreciate your time. I got the results from the amino and everything looks good. Thank you for responding, it always helps to know that someone else has gone through it too, being that I couldn't find too much of it on the internet. Thanks a lot and I'm happy to hear that your story had a happy ending as well.


Hi athena - November 7

How long did it take to get the results back from the amnio. I am scheduled for one on wednesday, but I can not wait up to 3 weeks to get the results.


Athena - November 7

It took about 12 days to get the results and it was very difficult because the whole time my life seemed on hold. The "what ifs" really take control. Try not to worry too much, because that can do harm to the baby as well. Anyhow, my amino was sent to a lab and because I'm very impatient, I called the lab several times to find out when my doctors office would receive the results. It turns out that my results were ready on the 2nd of October but because of a problem with the fax machine, my doctor never received them, so I had to wait 5 days longer than I really needed to. The lab explained that the process takes awhile sometimes, because it depends on how fast the cells grow...some grow faster than others. In any case the length of time it takes is not a reflection of whether or not something is wrong with your baby. Next of all VERY IMPORTANT...there is a test that you can take with the amino that my insurance didn't cover and the doctor that performed it said it would cost $280 (results in 1-2 days instead of the lengthy 10-14 days)....thinking back, I wish I would have paid it in order to get my results quicker, but at the time the cost was too much. So, check with your doctor to see if that's something he or she can do. Please keep me posted and I wish you luck. You'll be in my thoughts and prayers, but more importantly, know that you're never alone in this....there are always others going through the same exact thing. GOOD LUCK!!!!


hi Athena - November 8

Today we went in for the consultation and to go over options. We don't have insurance so all of this is going to be out of pocket anyway. The labs are very expensive ranging from $255 to $319 depending on what tests the doctor orders. He can do it in his office but prefers to have help from a radiologist who will be another $300 plus. Then there are hospital fees and doctors fees yada yada, but I just want to get this all over with. It is actually going to cost more than labor and delivery at the hospital. ( I got a deal on that, by registering early and because I am uninsured) I know that my chances are very slim 1:87 but because this is high risk for my age (33 and 22 weeks 2 days). We are going thru with it anyway. I NEED to know, I am sure you can understand that. I have a couple of questions: Were you on bedrest? Have to take any medication? My doctor says I should be fine the next day (Thursday) but I have a fairly active toddler who loves using mommy as a jungle jim. I am concerned that might be a problem too. Any tips are/would be greatly appreciated. Thanks in advance


Athena - November 8

I hear everything you're saying....and I can totally relate. This is my second child as well and while my daughter is already 5, she still requires a lot of attention and energy. I had the amnio done through a specialist and he would have charged me $1000 just do the procedure not including lab costs and God knows what else...I'm thankful for insurance. Anyhow, the specialist had me on bed rest for 48 hours following the procedure because of the risk of complications. My 5 year old is from a previous relationship so I asked her father to take her for those couple of days, which he gladly did. If you have a family member available to help out, I would strongly recommend that you reach out...now's the time that they could really help you out. If they could take your baby for a couple of days that would be even better. You should try to get all the rest you can...your body is going through a lot and you deserve it. Don't lift or pick anything up for awhile, and try to limit your activity as much as possible. I'm not a doctor, but those were the instructions I was given. Your doctor may disagree. Also, if you have a chance try to find out how often your doctor performs this procedure and what his/her percentage is as far as complications go...the more the doctor performs them the less likely you are to have problems. Also, when the procedure is being done, you should feel a cramp in your stomach area...that's normal....just try to relax as much as possible. You may feel a little burn when the fluid is being removed as well as when the needle is being removed...over all it's really not too bad. Good luck and let me know how it goes....I have a good feeling about this and I know everything will turn out fine for you and you'll have a beautiful baby to show for it when it's all done.


Hi Athena - November 8

Thanks for the advice and encouragement. Now all I have to do is try to get some sleep tonight. That hasn't been all that easy, but fortunately this all happened in a relatively short period of time. I found out my triple screen results Monday, had them schedule me then for the amnio tomorrow, called my husband at work told him all that they told me. Discussed all the pros and cons, thankfully we agree on everything. Now we just need to get through the waiting on the test results.


Athena - November 9

Well good luck, I know your test is today...please keep me posted, I'll keep you in my thoughts and prayers. I'm sure you've read that that triple marker test has a high false positive percentage...so i'm sure that's the situation with your case.


hi Athena - November 9

I took the test. I found it pretty unpleasant because I kept imagining this huge needle going to my belly. I have a very vivid imagination. I had to put a piece of paper up in front of my face because I wanted to see nothing. I was afraid to even breathe! The baby did choose that time to become active, so I was afraid he was going to stick her which did not help my nerves at all. Because she was moving he had to readjust the needle a few times which hurt. It was almost as bad as an epidural and definitely more uncomfortable. I survived and am taking it easy right now. It is definitely something that I never want to do again. I am not too crampy or anything and I have finally calmed down enough to breathe regularly and not be so tense. The doctor tells me I might have the full two week wait but that I could get the results back earlier. I will keep you posted with any updates.


Athena - November 9

Good to hear...now just try to rest and take it easy. Try not to think about it too much. I know it'll be hard...because I've been there. But just think once you get the results you'll have a much more relaxing pregnancy. Also, this whole process made me realize what's really important...and that's our children...money doesn't matter, bills don't matter, things just become that much more simpler once you get the good news. I really believe this whole experience was just an eye opener to help me appreciate life more. I really believe that yours will have a happy ending as well. I'll be looking forward to the results over the next couple of weeks. FYI, I had mine done on a Wednesday as well and my results were actually ready the following Wednesday, so don't feel like you can't call to follow up...you bug them all you want it's your money. GOOD LUCK!!!!!


Hi Athena - November 17

It's been a week and still no news. My regularly scheduled monthly appointment is on Monday. Maybe then they will have some news. I am managing to keep my mind occupied with other things so it isn't so bad. I hope all is going well with you.


Athena - November 20

I've been on bed rest for about a week now due to the fluid around my daughters heart. I went to see my doctor and he said that the fluid is still there, which is telling him that I'm still working too hard, so he took me out of work until the 5th of December. The good thing is that the fluid hasn't hurt her growth or anything. She still has a heart beat of about 140 and is right on track as far as everything else goes. It's just this d__n fluid that won't go away...which worries me to no end, because I just want her to be heathly. As for your results....please keep me posted. I keep praying for you and thinking about it. This is the first opportunity I had to get on the computer....so please let me know as soon as you get word. Again GOOD LUCK!!!!


Hi Athena - November 21

The results have not come back yet. I suspect they won't be back until after the holiday. We are pretty sure we already know the results. Today's US showed a baby with a heart defect that is common among Down's babies. Surprisingly, I am not very upset about it. I have already accepted this as an outcome. So now we are just waiting for comfirmation from the amnio tests. You try to take it easy and hopefully your baby will be great!


Athena - November 22

I know that while I waited for the results from my amnio many different things went through my mind. By the end of it, I was almost okay with the fact that Down Syndrome was a posibility. I found many sites on the web that talked about children in this situation and many of them live very normal lives including going to regular school, jobs...and even living indepently when they grow up. They are very affectionate and kind, something that some "normal" people could stand to learn. It made me think of that show "Life Goes On"....anyhow, I would have welcomed my child regardless if this was her fate or not and loved and raised her just like any other, and regardless of your results, I'm sure you'll do the same thing. Please keep me posted....the most important thing to remember is that you're never alone in this EVER!!!!



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