21 weeks and need more tests... don't know what to do....

This whole making babies, being pregnant and birthing babies is so much harder and way more stressful than I ever anticipated or imagined!

I had my 20 week scan the other day and one of the measurements wasn't quite right. It was a measurement of fluid in the brain (they called it VM) and our measurement was only just over what they would like.... they want it to be under 10mm and ours was 10.7mm.. so just over. Although 'normal' is between 7mm and 8mm. Everything else was completely normal, which is a great sign.

I've been old that this could mean many things, including a chromosonal problem or handicap. They're pretty sure its not downs, because of all the other results and the fact they couldn't find anything else.. but they can't rule out another chromosonal (sp?) abnormality, or another 'problem' with the baby... ranging from something really simple to something severe. The results they showed us from a recent study were good but it was such a small sample size, so I don't know what to think. From 43 cases where the measurement was between 10mm and 12mm, 40 of them were completely fine at 2 years of age, 2 of them had a mild abnormality and 1 of them had a severe abnormality. So chances are, all is going to be fine but there's still that chance of something being wrong, and knowing our luck.....

Anyway from here, there are lots of tests we can do but most likely none of them are going to come back with anything specific. They took more bloods today to rule out a few things and I have another scan to book in for two weeks time.. so they can check it all again. They also suggested and Amnio.. again to rule a chromosonal problem out. I'm so unsure as to whether to do this or not. She said that most likely it would come back normal but that at least it would put our mind at ease and rule it out altogeher.. but there are obvioulsy risks in doing an amnio and I don't know if I see the point in it. But... then again, it would be nice to know for sure that there's nothing wrong in that department. So... I don't know what to do. The other test they want to do is an MRI.. which is fine and I think we'll do that in about four weeks too. Basically she said the more tests they do, the more things we can rule out and the better the odds. I'm a little confused still and very scared but at the same time, the odds are in our favour and we should be quite positive.

Sorry for the ramble... I just don't know whether to have the amnio in particular or not. It sounds like the risk of doing the amnio is greater than the chance of finding something from it... so it makes me nervous.. then again, we definitely want to know if something major is wrong.. so it's a bit of a catch 22. Anyone else been in this situation and what did you do? Makes me nervous doing it at 22 weeks too!!

Thanks.

:hug: darl i wish i could offer you some advice but i cant, so though i could offer you a hug instead, i hope someone in the know can come in and help answer some questions for you

What a difficult situation you are in :hug:

It might help you to consider what you would do with the results of the amnio. If it transpired that there was a problem, there might be a lot of pressure on you to terminate and I know that some woman have decided not to have the tests because a termination would not be considered by them. However others need to know, either because they would consider a termination depending on the results, or so that they could prepare for a baby with special needs. On the other hand, as the results are most likely to show no problem then only you know how much worry you have and what you are willing to risk for peace of mind.

I'm sorry I cannot be more help, I hope you make a decision soon that allows you to relax for the remainder of your pregnancy.

Trav
xx

I can't offer anything but my support during this time :hug: and hope it all works out well for you.

Have you tried contacting the Monash Genetic Counselling group? They may be able to offer some other assistance / advice etc.

I am so sorry xx I can only repeat what traveller has said, why/what are you going to do with the test results esp the amnio and any others which are invasive? The best advice my ob has given me with all the tests you can do for genetics now is if it won't change your mind about having the baby don't do it.

Kel, I think the OP's have given you great advice. Consider what you would do with the results of the amnio. If you would consider termination should the amnio show that something is wrong then perhaps the risk is worthwhile. If you would not consider termination but you are looking for information and/or reassurance then perhaps it would be better not to have the amnio but to go ahead and have the other tests which can provide you with information but not carry the same risk to you or bub.

If you simply cannot decide whether to go ahead with the amnio, is it possible to have the repeat US a week after the first (another 4 or 5 days, I think?) instead of two? Is a week long enough that the measurement is likely to have changed? You could then make the decision based on the result of the next US. If the measurement is less, no amnio. If the measurement is greater, perhaps that is the little push you need to decide to go ahead with the amnio. And if the measurement is the same then you have a few days up your sleeve to decide what you want to do.

I have also heard that the Monash Genetic Counseling Group are excellent, I know several people who have dealt with them. I don't know what area you are in but perhaps an appointment at Monash with a genetic counselor would provide you with more information?

I know it is little comfort Kel, but as you said the odds are all on your side that your bubba will be just fine. There is plenty of support here for you, whatever you decide to do.:hug:

Hey Kelly,

Just wanted to add my support for you here. I agree with the above posts - you need to know what you'll do with the information. It also seems like they have been fairly non-specific as to what this could mean. Maybe you need to ask a few more questions to get it straight in your head?

I guess you need to weigh up the risks of the amnio vs risk of baby actually having anything wrong, plus knowing what you'll do - remember the amnio sounds as though it may be just as non-specific as the information you have now. You may be in no better position after an amnio than currently.

I hope you can work this out and I'm sending lots of hugs your way - best wishes xxx

Just wanted to give you a :hug: as it must be stressful dealing with all of this. I hope everything works out well.

Kelly, i am so sorry to read that you are going through this. I dont have anything to suggest and i am so sorry. speaking to a GC might be the way to go. with regards to the amnio, im sure there are others who have had them who would be able to offer you better advise than i.

Just want you to know that i am thinking of you.

I agree with PP. Would knowing the results of the amnio have an influence on any decisions you may make about the baby? Even the results could come back inconclusive or say maybe there is something wrong, maybe there isn't...do you think it is worth the risk of having it done to know information that may be as vague as you have now?

On the other hand, will not knowing worry you for the rest of the pregnancy? Maybe do the other tests first and see what they come up with then decide about the amnio... I hope everything is ok with your little bundle :hug:

kel :hug: ... this sucks.

Make a decision from your heart. Obviously figures are giving you nothing right now, so I think you and your DH need to make a choice about the amnio just based on your mummy instinct.
My heart would be saying don't do it; do all the other tests, but don't do that one. I can't back it up; it's just what I feel.

And maybe at your 2nd ultrasound everything will be fine and it turns out it was just a bug squashed on that part of the screen... (OK, completely stupid, I know. But I would love for this never to have happened to you)

Thanks so much everyone... I really appreciate you all taking the time to not only read my post but reply to it.

We've still got so much to think about and we have another appointment with our OB on Monday, so will talk though it some more with her then. I'm feeling particularly vulnerable tonight as DH is away (great timing).. thankfully he's home tomorrow.. and we're now living so far away from our family. Mum has been away on holidays and thankfully returned home today, so I finally got to speak to her on the phone. Its times like these that I'm really struggling being so far away from her... I desperately need one of those wonderful hugs from Mum. So feeling a bit down today. Hopefully tomorrow will be better.

DH and I both agree that if something was wrong with the baby we'd want to know and make an informed decision, so he's leaning towards doing the amnio but we want to wait and talk to the OB about it more first. It's so hard. Thanks also for the suggestions to see a GC.. it's something that the OB suggested to us and we're definitely keen to go down that track.

Thanks again... your support means the world to me and I'm still praying that it's all for nothing and this little bub is completely fine!!!

Kel xxx

Do what feels right for your family! Maybe another 2nd opinion on the scan is an easy start??

Hi Kel,

I am sure you are still mulling over your options so I thought I'd add some things I have considered during my pg.

My mum had amnios with my bro and sis without even considering not to, she just had Ob's who said she should due to her age (36 & 41) Both amnios had no effect on her pg. My friend who had decided with her DH, prior to getting pg, they would not consider having a child with any kind of test anomaly had every test they could. They had made the decision to terminate any pg with risk knowing that the were having trouble TCC (due to DF losing an ovary a couple of yrs ago, and DF's age -36/37)

My DH and I had decided that no matter what the outcome of a test we wouldn't terminate, so by that account we decided there was no point having any tests, we still had 19wk scans with the first 3 but as yet I haven't bothered with #4, we had a scan a few weeks ago, I know there's one in there and I feel it's a girl so I just see no point in another scan.

I guess for some finding out there's a problem allows them to continue the pg knowing and gives an opportunity to prepare, mentally or in some cases even the environment for the child??? If we did have a child with a severe disability I would probably want to move back to the city were I would have a much stronger support network and family.

I definitely agree with Tegam, a second scan before all other tests is a good place to start - 0.7mm is such a tiny measurment and unfortunately u/s have been known for getting measurements wrong in the past, sonographer error or baby position can effect the outcome. If you are worried about the risks of other tests it is surely worth re-checking if they are necessary.

The other thing you mentioned was, although there are plenty of tests that can be done, none will provide a definitive answer. Based on this piece of info I would wonder then if it is a good idea to subject yourself to the stress and inconvenience of multiple tests.

Will you gain enough knowledge from tests to make them worth it? Is what you know now, that there may be a chance of mild-severe disabilty, enough to decide on your pg? Will you with more tests that rule out certain problems, be able to change your mind about continuing or discontinuing your pg? And as horrible as it sounds would you be able to justify having done a test (say the amnio) if it causes a negative side effect to the baby or (in the rarest of cases, I believe <1%) a miscarriage? Your amnio risks are decreased further as you are past 18wks, there is much more fluid around bub these days and it is easier for Dr to get at it. The thing with the amnio is it will be covering a lot of things that can be assumed by the u/s, for eg. Trisomy 21 (Downs Syndrome), and neural tube defects (Spina bifida), and other chromosomal defects.

I don't know what you should do but what you decide will be right for you and your DH, I wish you all the strength and love that you need for the next month or so and I pray that whatever the outcome you and bub are well and healthy.

Sarah :D