Horrified at my 20 week ultrasound!

[moes]

I need someones help with this - I had a nuchal scan done at 13 weeks - I am 40. The results came back negative, putting me in a good risk group for my age, 1 in 770,. I was thrilled - until I went for my 20 week ultrasound! I had met this technician three previous times, and she seemed wonderful. I was chatting away with her about how lucky I am to be having my baby, and she said "Oh I can see the heart muscles on your baby, and I want you to know if the doctor decides to mention this to you, you should not worry everything is fine," The room started spinning, and I became exptrmely upset - the tech then advised that they do see this in normal babies too, and looked at my chart - she then advised "Oh you are fine!" When the tech relaiozed that she had upset me so much, she then told me I cannot mention this to anyone or she would be fierd! I did not know what to do, so I called a nurse at my OBGYN who I knew I could trust and presented the story to her-
she wanted to know who the tech was and I told her I did not want to cause any problems for the tech, and I just wanted to know if my baby was ok - the nurse phoned the tech (who worked at the local hospital) and the tech said that I was the one who spotted the white spots on the heart (I now know that they are echogenic foci) -the nurse of course did nto believe her, but did advise me that the sonogram test was reflecting everything as normal. The doctor who the tech works for who was not in when I was there phoned me 1 hour later and advised that I was the one who saw the spots and that my sonogram results are fine!? Again, stupid me did not want to get the tech fierd, so I told the doctor yes I did see the spots, and I just want to know what they mean or what I should do - she was annoyed and advised me that she already gave me my nuchal scan results and that she could not tell me whether or not to go for an amnio but it was not her recommendation. I am lost. I know this is alot to explain, but I really just feel like I was a victum and now I think I will go for another Level II sonogram - I am just so confused - was the tech doing me a favor and pointing out a potential problem with my baby - or just causing me alot of uneeded grief - I cannot eat or sleep right and because of my age I am really worried - I never even heard of a soft marker before this day and now it is all I think about. I did the trans nuchal scan becuase i understand it to be really accurate and most women who have foavoralbe results do not opt foer an amnio - now I do not know what to do - HELP!
SO HURT AND CONFUSED - MOES.

[pumpkinsmama]

How upsetting! I have no experience with this, but you deserve a hug after a day like that. There is a reason techs aren't supposed to tell you things, they aren't trained for it (not in the medical field, just what I have heard from my techs in the past). I don't think this one did you any favors, she certainly didn't even attempt to consider your feelings.

[Charles Baudelaire]

Originally Posted by moes

I need someones help with this - I had a nuchal scan done at 13 weeks - I am 40. The results came back negative, putting me in a good risk group for my age, 1 in 770,. I was thrilled - until I went for my 20 week ultrasound! I had met this technician three previous times, and she seemed wonderful. I was chatting away with her about how lucky I am to be having my baby, and she said "Oh I can see the heart muscles on your baby, and I want you to know if the doctor decides to mention this to you, you should not worry everything is fine," The room started spinning, and I became exptrmely upset - the tech then advised that they do see this in normal babies too, and looked at my chart - she then advised "Oh you are fine!" When the tech relaiozed that she had upset me so much, she then told me I cannot mention this to anyone or she would be fierd! I did not know what to do, so I called a nurse at my OBGYN who I knew I could trust and presented the story to her-
she wanted to know who the tech was and I told her I did not want to cause any problems for the tech, and I just wanted to know if my baby was ok - the nurse phoned the tech (who worked at the local hospital) and the tech said that I was the one who spotted the white spots on the heart (I now know that they are echogenic foci) -the nurse of course did nto believe her, but did advise me that the sonogram test was reflecting everything as normal. The doctor who the tech works for who was not in when I was there phoned me 1 hour later and advised that I was the one who saw the spots and that my sonogram results are fine!? Again, stupid me did not want to get the tech fierd, so I told the doctor yes I did see the spots, and I just want to know what they mean or what I should do - she was annoyed and advised me that she already gave me my nuchal scan results and that she could not tell me whether or not to go for an amnio but it was not her recommendation. I am lost. I know this is alot to explain, but I really just feel like I was a victum and now I think I will go for another Level II sonogram - I am just so confused - was the tech doing me a favor and pointing out a potential problem with my baby - or just causing me alot of uneeded grief - I cannot eat or sleep right and because of my age I am really worried - I never even heard of a soft marker before this day and now it is all I think about. I did the trans nuchal scan becuase i understand it to be really accurate and most women who have foavoralbe results do not opt foer an amnio - now I do not know what to do - HELP!
SO HURT AND CONFUSED - MOES.

I've been there. Do the amnio. Yeah, it's a risk you'll miscarry. It's also a risk that, if you only have an US, they will miss significant markers for Down Syndrome. It happens about 13% of the time. To me, a 2% miscarriage risk was better than a 13% Down risk.

You basically have two questions to ask yourself:

1. Can I be the parent to a child with Down Syndrome?
2. If not, am I willing to have an abortion?

I am so sorry that you're in this position. I don't know how you feel, but I know how I felt. I hope everything is fine.

[Nosy]

When I went for my 20 wk ultrasound w/DS2, I noticed the tech was spending a lot of time on the heart. I asked why and was told there was an echogenic foci on the heart. I freaked out about it and did lots of research online. My midwife told me the next week at my appt that it was no big deal and that no one really knows if the echogenic foci mean anything. I found a thread at babycenter with about 400 posts of people who had echogenic foci on their ultrasound but no problem with the baby once he/she was born. We didn't do an amnio. My DS is now 12 weeks old and no Down's Syndrome and heart problems that we know of. With that said, I know I can't tell you not to worry because I certainly did! Hope that helps!

[bri276]

what it boils down to is whether or not you would consider abortion if you knew your child had a problem. or if you just really NEED to know for sure before the birth.
my child has a chromosomal abnormality and I am so glad I didn't know before birth, because the rest of pregnancy would have been absolute hell. when she was born she did nothing but sleep for weeks. she was so lethargic she was kept in the NICU for 5 days. if I'd known she had a disorder, I would have been beside myself, thinking she'd be a vegetable. Instead, I didn't find out until she was a few weeks old, and she eventually "woke up" and became the bright, cheery, adorable baby she is now, who is meeting most of her milestones right on target and while she has a few problems, there would have been nothing I could do during pregnancy or before her diagnosis that could change anything.

it's a personal decision. if your dr doesn't think an amnio is necessary, is that because there are no other signs?

[Tori Gollihugh]

I think that any further testing should be dependent upon whether you would think about aborting or not... at least in my opinion. If you will keep your child regardless of the hurdles you may need to face during his/her life, why worry about it right now!? I mean, I would much rather enjoy my pregnancy, which is exactly why DH and I will not have any tests or ultrasounds in any future pregnancies including this one.

We came to this decision because we were told we HAD to have a U/S to get admited to this birthing center (the only one in our area). So, we had it because we really wanted to birth there. Well, there were "possible" problems revealed by that U/S, so we were sent to maternal fetal medicine in a high more tech hospital than the one associated with the birth center. There we had ANOTHER and more powerful U/S. This troubled us because we knew that there were unknown risks with U/S and really hadn't wanted any during the pregnancy. Well, that U/S revealed more "possible" problems that were REALLY serious. The midwives at the birth center wouldn't accept us and we felt like those US were for no reason. We transferred to another midwife, knowing we would have to have a hospital birth, and she (consulting with her Doc) couldn't find ANY of the problems the others had said were the reason for rejecting us!!!!!! Anyway... we felt that the whole experience sort of invalidated US because different readers could see different things. And I've heard this happening a LOT more among those I know than what most people seem to realize.

I wouldn't do the amnio - FOR SURE... and I would have my US results sent to another Doc for a second (even third) opinion before having an additional one! JMHO, though.

[J-Max]

Just wanted to share our story with you

At the 20 week u/s with dd#2, they found an echogenic foci in the right ventricle, and a 2 vessel imbilical cord. These are both "soft" markers for downs. By "soft" marker they mean that many babies with DS have these, but just because they have these do not mean your baby will have downs. I had a very intensive level 3 u/s with a perinatalogist at 22, 30, and 35 weeks. These were to check the growth of the baby. They were also able to determine (at the 22 week) that the baby did not have any other charateristics of DS. We decided not to do the amnio, both because of the rate of complication and we would still have the baby, so we were prepared for both outcomes at birth. When dd was born, she appeared "normal", but we still had a chromosomal panel done, which was normal.

[MommytoTwo]

Wow. I am so sorry. I would make an appointment to see and sit down with your doctor. Discuss your fears and what if anythign should be done and you better believe I would tell her what the tech did. Sorry but she has to face the music. That is called responsibility.

[Decca]

I am 30 weeks pregnant and we have been told the baby has an echogenic focus as well. After a second ultrasound, they have seen no other signs, and combined with my normal quad screen results, we've chosen to believe that this baby is fine.

I think it's telling you weren't even told the correct name for it, but rather "heart muscle," which makes me think there isn't a problem. Go back again and ask for a full explanation. There's no way you can know for sure without an amnio, but if that is the only soft marker and your quad screen or AFPs were in the range of normal for your age, the risk of an amnio is still higher than the chance something is wrong with the baby.

It's a numbers game - what they're seeing changes statistics. It doesn't diagnose anything.

[MsMoMpls]

Ok- just to add another statistic to the mix of how confusing this is- the 2% rate of miscarriage is very dependent on who does your amnio. My doctor had records of how many hundreds of them he had done with no problems... not just some solid 2%- I am sure there are really lousy doctors out there responsible for many of the miscarriages.

[emmalala]

I had amnio with all 3 babies (I'm very old) and it was OK. For the second 2 we went to the experts. When the 2nd one was done, I realized how clumsy the previous one was!

Of course this is not statistically valid or anything but that is my experience and HTH

I would highly recommend finding someone who does amnio all day long, not just anyone who does it nearby. It is worth a drive, especially if you are apprehensive about it. If you are in driving range of Boston, PM me and I'll give names

[alexsam]

It seems like there are 2 issues:
1.) The behavior of the tech and the other medical personnel
2.) Fears about your baby

As for #1, as someone mentioned, there are reasons why techs are not supposed to say anything. They are not doctors. She was trying, ineptly, to tell you that to her level of understanding, issues she may or may not have seen relating to your baby's heart do not mean Downs. Understandably, just the words can get a mamma-to-be nervous, and she shouldn't have said anything. But she did- and everyone else (who ARE trained specialists) told you not to worry as well, but of course, we all do! No matter what! They also should not have gotten snippy with you.

For #2, all I can say is that I have yet to meet a mamma-to-be that has not worried about the health of their unborn baby. There are lots of scary things, lots of unknowns... it is a time of faith and hope. I don't want to advise on more tests or whatever- that's totally your call. But worry happens- even with the yongest, fittest moms that get "good grades" on all their "tests". We can't see the future. We know that there can be very serious things out there, but there is not a doctor or test in the world who can guarentee 100% the health of any baby. There is no way to see what will happen in our lives or our children's lives. This is the first step in being a mamma. The same "Is my baby going to be alright?" feeling will come back the first time you leave them with grandma, when they get sick, the first time you end up in the ER, when they suffer their first broken heart... But we go day to day and do the best we can and put worry away, because if you worry, you miss the good parts.