Amniocentesis curiousity

[Gigi]

Got my nuchal scan result today (Monday lunchtime) - i have a 1 in 6 chance of having a down's baby. (at 38). Is this number really high? The other thread i found on this subject mentioned women whose risk were numbers like 1 in 147 for example.

Have been slotted in for a amnio test Wed morning 10am.

I am scared. I need to hear from other women who have some experience or knowledge of this amnio test i think, to keep me sane. This part of 2nd trimester is not feeling too magical.

[Gigi]

Thanks Emma.

I was really hoping to talk to someone, anyone, who had been thru an amnio themselves, but with 10 hours to go, looks like that will not be happening.

I had convinced myself that because the morning sickness went on so long and was so yuck, that the tradeoff was that other things in the preg. would be cruisy. I had been told up to now i was low risk with normal blood pressure. Hmmmm.

[Ca Plane Pour Moi]

Hi Gigi. Sadly all I know of amnios are what I learnt at Uni, so I'll probably be less help than anyone else, but just want to let you know I'm wishing you all the best for this! There is a small risk to the baby, but it is small, and even smaller now you are in your second trimester. If you want any info on the genetics side of things I'll drag up some info for you, also check the results for a level of mosaicism (a mosaic baby) - the people there, or giving you the results, will be able to explain this very well, but basically this is where some of the baby's cells are Downs and some aren't, so can change the level of the severity of the Downs syndrome. Hope you get through all this ok.

[Tracey]

My sister had to have one with her second pregnancy as she lost lumps of blood whenever she moved...

She honestly said it was extremely painful she was 18-19 wks at the time (sorry, but I will tell you what she experienced, as we sat together for a long time during the few weeks of worry)
They did ultrasounds & said the baby was not forming correctly & was severley deformed, as my sister had spent 2 years at Uni studying to be a special needs carer, nurse etc she decided that this is what their destiny was... But her OB recommended the Amnio, she said it was awful & she felt torn, but the fluid that was extracted was thick & black like coffee, it is supposed to be clear apparently...
The baby was drowning itself apparently & had organs growing on the outside of it's body... They told her the baby if delivered would die anyways so after having 1 day to decide they decided the baby would die anyways & to terminate the pregnancy...
She delivered naturally after having gels inserted over a 24hour period, her husband slept beside her in the hospital as she began having contractions & a nurse held her as she delivered their 2nd son..


This is a totally different scenario to what you are going through & my sister went on to have another baby & she is a perfectly healthy 5 yr old now...

I am sure as you said you havent had any other issues during your pregnancy that all will be perfectly fine...
I dont wnat to alarm, you because as I said my sister had been losing chunks of blood the entire pregnancy... They already knew there were problems with the baby but were not aware how severe they were...

I pray for you & will be reading here soon that all is fine!!!

Big hugs & my thoughts arew ith you...

Infact I think Lucy (a mod) had an amnio, maybe search back into the archives as herexperience was not at all like my sisters & everything was fine with her daughter!!!!

[Angel Babies 3]

I am sorry that I am probably a bit late with this reply. I have had 2 amnios. The first time I was very aprehensive as I had no idea what to expect. I must say I was presently surprised. It wasn't something that I liked to do but I didn't have any pain. The OB was skilled and very understanding. The midwife present was also great. It ws over and done so quickly and I had no problems afterwards. The second time also went very well. I won't say that it hurt either time but it was a strange sensation. But they were so gentle and quick that I wouldn't hesitate to have it done again.
Oh, I was 39 when I had the first one (no nuchal scan I just chose to have it as I wanted a definite answer and it is safer than CVS) and 41 the second time and both times I had a beautiful healthy daughter.

Hope all goes (or went well).
Thinking of you
Debbie

[Inanna]

I too havae only seen this thread and fear I am too late also.
I have had 2 amnios. With dd3 and dd2. I agree I had no pain at all. It wasn't nice knowing a needle was so close to my precious baby but it was all over very quickly. I had no problems whatsover afterward and birthed 2 beautiful babies after amnio.

I think there is often a lot of fear around the procedure. With any invasive procedure there is a risk that cannot be denied. The risk in the hands of an experienced and highly recommended practitioner is very low.

I know you will have had your amnio by now. I pray with all my heart that things have gone well for you. Please come and tell us how you are.

Huge hugs to you,

[Lucy]

Gigi, I am so sorry I didn't see this thread earlier.......I had an anmio with my son Charlie (and also recently a CVS).

The thread is on the old forums, and the link doesn't appear to work (but if you Google "amniocentisis lucy bellybelly" it will come up, especially if you want to read the whole discussion. My original post is listed below:

I have had a scary month or so recently. I went for my NT scan at 12 weeks, and the scan showed nothing to worry about in connection with Downs. However, the results of my blood tests (Triple Test) came back, and to our horror, showed the risk of Downs/chromosonal abnormalities to be 1:245.

You can imagine how very distressing this was for us, and it caused a lot of tears and heartache when we found that the recommendation was for me to have an amniocentesis, in order to clarify the results. (The blood test is only a screening test, the amnio is diagnostic and gives a yes/no result)

One of the problems with an amniocentesis is that the procedure carries a risk of miscarriage (approx 1:200) which understandably is a scary risk. Although this risk is often lessened, depending on the expertise of the practitioner performing the procedure. (I checked with my OB for instance and his personal risk stats are 1: 374).

The other problem with an amniocentesis is that you find out you need one at approx 12 weeks, and they like to perform it (to minimise the risk of MC) at 16 weeks, so there is a long wait before you actually have the procedure, which can be stressful.

We found that the waiting was excrutiating, especially as one of the questions running round in everyones head is "What do we do if the baby is shown to have severe disabilities?".

Finally I had the procedure. I had read up as much as I could on the procedure itself: basically the Dr gives you a small amout of local anaesthetic on your tummy, uses ultrasound so he can see exactly where the baby is, and then uses a long thing needle to extract amniotic fluid from the sac around the baby, through your tummy. It took about 10 minutes all up.

I found that the procedure wasn't painful at all.....a little tiny bit uncomfortable, but not painful. To be honest, it was a relief to get it over with.

The signs of an impending MC are cramping, which I did get, but only for a few hours afterwards. I was told to rest up that day and take it easy, which I did, & the cramps were all gone by the next day, which was a relief.

Then we had MORE waiting, for the actual results. The fluid that is extracted is left to form a culture and grow so that the cells can be tested for all manner of chromosonal abnormalities. As such, the results take 2 weeks to come back, & the waiting feels like forever. You can get some of the results back more quickly by requesting Fast FISH results, but this does cost extra.

Anyway, we have finally had our results back today, and I am glad to report that all of the results are clear and NORMAL and show no abnormalities at all. (You can imagine the utter relief I am experiencing!)

The one positive about having an amnio is that you do get the option to find the sex of your baby, which is 100% accurate. For me, that kind of made up for all the stress and waiting!
Sorry this is such a long post, but I wanted to detail my experience, just in case any of our other Belly Belly girls are faced with having to go for an amniocentesis.

Sorry I didn't pass on the info earlier for you..........I hope you are doing OK?

[Tracey]

Lucy may I ask what a CVS is?

Thanks...

[Lucy]

Tracey sweets, it is kind of like an amnio, but instead of taking the sample from the amniotic fluid, they take the sample from the emerging placenta. This enables them to do the sample earlier.

CVS stands for chorionic villus sampling. The test can be done as early as 11 weeks. (Which is why I opted for this in comparison to another amnio, as the amnio results are found at around 20 weeks, by which time I knew I would be too 'attached' and would've most likely felt my baby kick etc, removing any real options for me, if you get my drift?)

The reason I had one was that this pregnancy was totally unplanned, and I had age not on my side, plus I had not been taking any folate or anything, so I was a real nervous nelly. And whilst I got my head around 3 under 3, we also wanted to know as early as possible so that I could stop freaking! (We have a history of Downs on my Mums side of the family).

The actual procedure is very similar: they insert a fine needle in through your belly (or sometimes through the vagina) and guide the needle whilst looking at the baby via ultrasound, to collect the sample. Risk of MC is slightly higher.

The sample is then sent away for testing, with a 10 day wait for results.

I found the whole thing excrutiating (but not painful) and nerve wracking, but we got an all clear result, which is when I finally announced my pregnancy.

Any other q's, let me know?

[Tracey]

WOW Thanks Lucy... Tickled pink that all is perfect....
I am guessing (maybe I have read it before) but that she will be another girl? Can you find out the gender through this test too?

Well done thrilled your bubba is healthy & all is going great guns!!!

Thanks heaps for explianing it too...

[Gigi]

First of all, thanks for all your kind words of support - hopefully June 1st is the day i find out the results.

I appreciate i was asking and searching for support in a real rush, news of having the test was just thrown at me, it happened all so fast, and i fully appreciate most of the forum members have kids and households to run, so i understand why responses were not instant - it was unrealistic of me to hope for that.

I did do a SEARCH for amniocentecis on this site and didn't come up with much. No doubt there were posts on here about it, i just couldn't locate them - i was prob too upset to think straight enuff to look properly.

INFO TO HELP OTHER WOMAN WHO HAVE AN AMNIO TEST: (based on my experience of having one yesterday).

I have just had one, and found it hard to find anyone to talk to who had already "been there, done that", so now i have had mine, i would like to share the experience, so that hopefully, subsequent women who go thru it, have something to go on, not go in blindly like i did.

Other woman on this forum have posted some of their experiences and i invite other belly belly members, to share their stories too.

Gigi's amnio test as an outpatient in a public hospital

1. Finding out
i got told i needed the test over the phone by a abrupt tactless midwife. The news stunned me so much and there she was, asking me to make decisions on the spot! It was all too much. My advice is, if this happens to you, go speak to a medical person you feel safe with, like your gp, and don't be alone to deal with all the feelings that will come up. It also really helped me to go visit a girlfriend and spend time with someone sympathetic.

2. Test prep:
you don't need to do anything particular, like drink lots of water (as you do for the nuchal scan). I think the most important thing you could do is *** take a support person to drive you there and back, and hold your hand in the room where procedure is done *** re-arrange your schedule so you can rest after the test in case you get all crampy and woozy like i did

3. the actual test
On the day, first of all my partner and I met with a specialist obstretrician who took us into a private office, using diagrams explained exactly what the test involved, a 1 in 200 chance of triggering a miscarriage by agreeing to have the test and what the risk numbers meant.

The test looks at the 46 chromosomes (23 from mum, 23 from dad and yes , it shows the gender of the baby, whether there is a x or y). The 21st chromosome is the one that shows whether Downs syndrome is present or not. If there are THREE 21st chromosomes, your baby has downs. There should only be TWO 21st chromosomes.

It was explained a regular test takes two weeks for the results to come back. Also there is a FISH test, you pay $200, it comes back in a few days, but is non-conclusive until the two week test comes back.

If the Amnio comes back positive for Downs, the next step is to have the CVS test. That is also invasive and carries a 1 in 100 chance of triggering a miscarriage.

Next we went into a treatment room, there was the specialist obstrectrician, a nurse, and a sonographer. I got up on a trolley bed thing.

The sonographer started doing an ultrasound. I am exactly 16 weeks along.
The obstet. painted my abdomen with a brown red antiseptic. (no local anaethestic was used).
I didn't look but the obstret took over the ultrasound probe tool and then inserted a needle into my stomach, bit lower down than i expected.

The pain was bearable but not at all pleasant - my partner said it took a few minutes - of course it felt longer to me! The obstret. knows where it is safe to put the needle by being guided by the ultrasound (so they can avoid jabbing the baby).

Immediately after i felt rather woozy to my surprise, and got crampy legs like bad pmt. We sat in the waiting room for a while, then went to nearest cafeteria so i could have a drink and a snack. I felt like if i didn't do that i would keel over.

I had not expected any after effects, but was so glad my partner went off and got the car and brought it to the front of the hospital so i only had a few steps to walk. I was not in a fit state to drive.

The obstretician had rattled off a list of things to watch for, the kind of thngs you should get medical help for straight away, like bleeding or leaking. He advised i take it very easy for rest of day - he was right.

For the rest of the day i did diddly squat. Each time i got bored and would get up to do stuff, the aches and pains made me sit down again.

In summary, the amnio test was a bigger deal than i had anticipated - emotionally and physically.

It may involve NO pain or after effects for you (you lucky duck), but my advice is to BE PREPARED. Take a support person, if you need them - they're there, if you don't, at least you have a friend on hand to have a coffee with afterwards.

[Inanna]

Hi Gigi, I am Deb and I saw your post too late. I am so terribly sorry as I have had two amnios and I could have helped you.

Did you opt for the fish test? I am just wondering as I did with mine and that was helpful. The fish doesn't test for the whole gamut that the complete chromosomal analysis does but it does test for the most common trisomies.

I am sorry you felt a bit woozy afterward. It is a very emotional thing and I felt very 'worn out' afterward. I didn't have any cramping but what I did experience was a cold feeling in my legs and belly after ward. That only happened with my second amnio not my first.

How are you feeling today? I hope you are feelling better. I am sending lots of hugs, what you are going through is really really difficult. If you need to talk to someone I am here.

Can you tell me why you will also have a cvs? I don't understand...

[Gigi]

dear flowerchild.

thanks for your words of support. It makes me feel less alone reading them - cos who else but another parent or parent to be on this forum would really understand?

There is no way we could afford the fish test so that was never an option.

Today i am still feeling pain in my stomach and a bit under par i guess. But no bleeding or anything that i would consider getting medical help for. So that's good.

I am not scheduled for a cvs at the moment. That is only my next option IF the amnio test result is positive for downs. So if the amnio result is negative, i won't need a cvs test.

in my post, i put:
If the Amnio comes back positive for Downs, the next step is to have the CVS test. That is also invasive and carries a 1 in 100 chance of triggering a miscarriage.

Lucy,

I would have loved to have read your post before my test, if only i knew where to find it (at the appropriate time i mean). I didn't want to google for amnio info cos i thought i would get bombarded by links to medical journals full of doctor jargon when what i really needed was other women's experiences.

just in case, do you know if there is any CVS posts on this site? about what to expect? (although your ref to it above was a good summary - ouch about the needle in the vagina though - can you elect to have it in the stomach instead? (crosses legs).

[Inanna]

Hi,
Glad you are feeling okay today. Be kind to yourself and rest if you can.
Yes, I got that you will be given the option of cvs if the results of your amnio aren't favourable but I am wondering did your ob explain why? Was it to do with mosaics? I am a bit baffled. Did your ob explain that the fish test was claimable with medicare? I am not sure how much you get back but it was quite substantial from memory. Just a thought...

I don't know if there are any posts about cvs. I am sure Lucy will be able to give you a more in depth personal account if you would like her to.
CvS can be done transvaginally or through your belly. Transvaginally of course the procedure is done through the cervix. It is no more painful that way, I believe, but much less dignified. I think Lucy had hers done abdominally.

I wish I could help more.
Lots of hugs,

[Lucy]

Gigi hon, I feel so bad I didn't see your post earlier.....you poor chook. My huge post on amnios was lost in the switch to the new forums, hence you couldn't find it. Like you, I felt woozy and emotionally and physically drained too, after my amnio.

I truely hope you get all clear results from your amnio.......the waiting will be tough, so prepare yourself for that.

If you do have to go for a CVS, it is a very similar procedure. I had my amnio done in Darwin in Feb 05, and my CVS for my current pregnancy in Adelaide just recently, and despite the different practicioners etc, I found them very similar.

I totally agree that having a support person there is vital. My DH was with me for the amnio, but unfortunately he was interstate when my CVS was scheduled, so I had to go by myself, which was the hardest bit. I ended up getting all teary and emotional, not through the pain/discomfort, but I just wanted my DH's hand to hold and his reassurring words.

It wasn't painful, but it felt weird, like an unpleasant tickle on the inside? I did have mild cramping for a few hours afterwards, but I rested up and was as right as rain by the next day.

The up the vagina option is for circumstances, I think, due to placental position being anterior at a later stage of pregnancy, but don't quote me on that. I had the needle through the belly, hence its similarlities to an amnio.

All other parts of the procedure were nearly identical, the main difference being that they take the sample from the placenta instead of the amniotic fluid. No FYSH test is available for a CVS, so it is a long wait for results.

WILL BE THINKING OF YOU GIGI

Tracey......yep, you can definately get a 100% result on gender: we are expecting a healthy little girl this time, so Olivia and Charlie will be getting a new baby sister...........

[Angel Babies 3]

Gigi,
Hope you are feeling a little better. You are right, these sort of tests can be scary and they are different for every woman.
I'm also a bit confused. Why have they told you that if the amnio results are positive for Downs that you need to follow up with a CVS. The amnio results are pretty conclusive and CVS is usually only ever done between 10-13 weeks. I am just curious.

Do take care
Debbie

[Gigi]

Hi,
Glad you are feeling okay today. Be kind to yourself and rest if you can.
Yes, I got that you will be given the option of cvs if the results of your amnio aren't favourable but I am wondering did your ob explain why? Was it to do with mosaics? I am a bit baffled. Did your ob explain that the fish test was claimable with medicare? I am not sure how much you get back but it was quite substantial from memory. Just a thought...

I wish I could help more.
Lots of hugs,

I still have a strong pain round about where the belly button is, have had that all day and all night (still). Feeling very achey everywhere. Went to a preg. care class at the hospital tonight, everyone else seemed so damn healthy. Not one complaint of any morning sickness or preg. related symptoms their entire 1st and 2nd trimesters. I must be a freak. I was fit before the preg, not overweight, no diabetes or high blood pressure. I have been nothing but ill since becoming preg.

now i think of it, i don't remember much being explained about the cvs (except it would be the next step). I don't know what mosaics are (in the context of pregnancy). Nothing was told to us about FISH test being a Medicare thing. I feel baffled now too! Your questions make sense, i just don't have the answers.

You have helped heaps, all of you have, by posting and showing your support to a total stranger who you don't even know.

[Gigi]

Gigi,
Hope you are feeling a little better. You are right, these sort of tests can be scary and they are different for every woman.
I'm also a bit confused. Why have they told you that if the amnio results are positive for Downs that you need to follow up with a CVS. The amnio results are pretty conclusive and CVS is usually only ever done between 10-13 weeks. I am just curious.

Do take care
Debbie

Debbie, i honestly don't know. The timing of the CVS wasn't even mentioned. The absoluteness of the amnio was mentioned, that we would know for sure, one way or the other once results came thru. I was so anxious at the time, maybe i remembered that part wrongly. I keep glazing over when the statistics came up, maths has never been my strong point.