Amnio - playing the odds (bit long, oops)

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Original poster

ggglimpopo · 15/07/2004 13:11

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OP posts:

hana · 15/07/2004 13:19

you sound relieved that you've made the decision, I hope it all works out

Twiglett · 15/07/2004 13:22

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bunny2 · 15/07/2004 18:24

As I said, I have never regretted refusing an amnio, hope you find the same.

tamum · 15/07/2004 18:27

Well done ggglimpopo. I'm sure it's a wise decision. God luck with the scan

fairyprincess · 16/07/2004 00:02

All the best - will you have dp with you for the detailed scan. For me they were always v.stressful - so support could be helpful. Also to backup your decisions Many best wishes.

eidsvold · 16/07/2004 06:19

hope all goes well with the scan... and if you need to ask or want to email - just contact me via contact another talker....

kalex · 17/07/2004 21:46

GGGlimpopo, this is so horrible for you, I really don't have any experience, but surely if you are going to keep the baby regardless of the results, an amnio would be pointless, and put the pregnancy in a precarious postition anyway (is there not a 1/200 chance of miscarriage in amnio.

You and your DH are in my thoughts

tamum · 17/07/2004 22:00

ggglimpopo, I am really sorry you have this worry. There is the possibility of false positives with this test as you know; also, the risk at age 40 is 1/100 rather than 1/250, so it's not quite as much higher as it sounds. If I were you I would probably have the amnio just so that I knew before the baby was born but kalex is right about the miscarriage risk.
Thinking of you.

Samcj · 17/07/2004 22:02

Don't let them influence you with what they believe to be best. This is your pregnancy, your baby. If you don't feel the need to know before the arival of your child than there really is no point. If you won't abort it then again, no point. Will you still be having your anomoly scan so any more detrimental potential problems may be picked up?

Basically, don't forget that this is your decision no-one else. Must be horrible to be going through this as well as feeling like your actions are being questioned. Good luck, let us know how it goes.

hana · 17/07/2004 22:03

ggglimpoo, you sound very certain and sure of your decison and I would stick to that and not have the amnio done. It's awful to be critised for such a personal decison by a friend and it's you and your dh that really count, isn't it?

I don't have any personal stories myself. I too though , would also turn down amnio testing (and have) and would (and will!) embrace my own baby in December.

I know you know it is just a risk and there is every chance that you wouldn't be the one in ten. It's a shame that pregnancies are blighted by these worries - good or bad - when it should be such a happy happy time.
thinking of you
hana

zebra · 17/07/2004 22:17

I heard a story of some1 who was given odds of 1/5 and the baby didn't have Down's. Friend had odds of 1/28 that baby didn't have Down's, either. But then, you can get odds of 1/3000 -- and just be that 1 in 3000.

You've obviously thought it all through and are definitely making the right choices for you. I myself probably would terminate a Down's fetus, but am still upset at the pressure you've been put under.

katierocket · 17/07/2004 22:22

ggglimpopo sorry to hear you are going through this. personally i refused all tests including the blood tests on the basis that i would not abort a DS baby and that if I got a high rating i would just worry for the remainder of the pregnancy. Some people I know said that would rather know so they could be prepared. it's YOUR choice, if you don't want the amnio, don't have it. {{}} Hugs

And I'm sure you'll find some very positive feedback from mothers of DS children on this site should your baby have DS, but has zebra says, you can be the 1 in '1 in 3000' or one of the other 9 in '1 in 10' IFYKWIM

geekgrrl · 17/07/2004 22:35

hiya gggplimpopo, I don't have much testing experience but I do have a child with DS. She is of course a lovely little girl. I hope eidsvold sees your post - she too has a little girl with DS, and had a prenatal diagnosis. I also know several people from DS mailing lists and bulletin boards who continued the pregnancy after finding out from amnio. There are a couple of women who had amnios on the UK-DS mailing list - if you want I can give you further details of how to sign up.
It's great to hear that your dh feels the same as you about it all, that must be such a relief. I hope you can, despite all this stress, enjoy the remainder of your pregnancy and end up with a healthy bundle of joy!

geekgrrl · 17/07/2004 22:39

Also, if you wouldn't terminate but really need to know, you could have a very detailed level II ultrasound and also a fetal heart ultrasound which would probably give a good indication either way. Of course some babies still decide to surprise parents. My daughter showed up no markers at all at the 20 week scan, and my age-based odds were 1:1700 or something like that.

Janh · 17/07/2004 22:43

gggl, I was going to say what the others have said - you have 9 chances in 10 of the baby not having Down's. In any case you sound so certain (and so does DH) that what anybody else thinks is irrelevant. But if it would help you to know for certain if the baby has Down's or not then maybe amnio would be a good idea, providing you can find out the statistics for the centre where you would have it done. (I had amnio with DS2 at a bog-standard NHS hospital in Burnley and it was OK...)

Good luck...

bunny2 · 17/07/2004 23:23

ggglimpopo, I recently went through something similar. I am 20 wks pg at 38 y/o. At 12 wks I had a nuchal translucency scan (a measurement from the back of the neck, if increased can indicate Downs). My age-related risk was 1:120 but after the nuchal scan it was adjusted to 1:44. I was put under pressure to have a CVS (3% miscarriage risk) the follwoing week but I dug my heels in and refused. I decided (well, with dhs input too) that we would not risk losing the baby even if there were problems. We had a difficult 7 week wait until they did a very detailed anomoly scan at 19 wks. They found absolutely no markers for DS and I am now determined to enjoy my pregnancy. Dh reminded me many times that, when put into a percentage the odds didnt sound so bad for instance I had a 97.6% chance of a healthy baby, in your case you have a 90% chance of a healthy baby, that sounds pretty good to me.

Another consideration is the huge number of false positives these tests churn out. I found lots of womens experiences on another board (sorry Mumsnet, hate to recommend another site but it is good for this). It is at babycentre.com here . Go to Prenatal Testing and look through the different discussions. Most opinions seem to be that the blood tests are horrendously unreliable.

I never regretted my decision to refuse an amnio/CVS despite a difficult wait of 7 wks for more information.

tamum · 17/07/2004 23:25

Can I just add, when I said "I would have the amnio if I were you" I phrased it badly- I really meant that this is what I would probably choose, but it came out sounding like advice. Sorry.

twiglett · 18/07/2004 00:42

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eidsvold · 18/07/2004 02:23

ggglimpopo - when I was 20 weeks pregnant with dd - they discovered a heart defect which is a hard marker for Down's syndrome... the fetal cardiologist offered us an amnio and we said no - given that nothing would change the outcome - that is we were having the baby anyway.

Her heart defect is commonly found in children with ds and rarely in children without - so basically the cardiologist told us that dd would have down's syndrome. Having said that there a lots of children with Down's syndrome born with no medical/health problems. We were given detailed anomaly scans and other than her heart defect - there were really no soft markers to point to Down's syndrome.

Dd will be 2 1st of August - she has survived two open heart surgeries and some complications but to look at her now you would not know.

No2 is due early Nov and at this ultrasound they detected a very soft marker for Down's syndrome - although dd does not have the very rare form of 'inherited' Down's syndrome - I am at a higher risk than others my age simply as I have had a child with Down's syndrome. No one seemed concerned when this soft marker was discovered and basically said as nothing else was found it would be very unlikely this baby too had Down's syndrome.

It can be a difficult time - we just got on with the pregnancy and enjoyed preparing for welcoming dd into the world - figured we would worry about the rest ( heart surgery etc) when the time came. It was tough and hard but we made it through - especially as dh and I were so supportive of each other... and dd is wonderful - she has her moments like any child does but generally she is a dream!!

Those blood tests are generally statistically unreliable and I did not have any with either pregnancy given their unreliability.....

If you were really worried could you not ask the consultant for a referral for a detailed anomaly scan rather than an amnio.

I think if you and dh have decided that this baby will not be terminated - I personally would not put myself through an amnio - sodd the cons and his pressure. I do not think you are mad or selfish or whatever....... After all it is your baby not his/hers....

Hope that is a help - if you want anymore info or to ask any other questions - feel free...

fairyprincess · 18/07/2004 02:34

Hello ggglimpop,

I'd take the appt with the geneticist - to talk it through. If you really don't want the test then go with how you & partner feel. I have had an amnio and one of the reasons was to know if there was a problem so that I and dh could prepare ourselves - find out info, contact support groups, get things sorted... The amnio result was ok and the relief I felt after being faced with almost certain problems was immense. I know that hearing about how it was ok for others isn't a great help for you - but I wanted you to know how the amnio would have helped us whatever the result. Wishing you all the best - my thoughts are with you xxx

colinsmommy · 18/07/2004 02:39

My mom had my sister at 42, and she was high odds for a DS baby. She would have had my sister no matter what, and had NO desire to have an amnio. I don't remember much about her pregnancy, but I do remember how strongly she felt. My sister had no problems except for jaundice.

I think your friend is horrid for saying that to you. My sister is happy and healthy, and is actually one of the best-behaved teens you will ever see. I am sooo happy that your husband is supportive.

Marina · 18/07/2004 12:30

gglimpopo, hope all these posts make you realise that you are not "mad" to decline invasive testing or to choose to continue a potential DS pregnancy.
I had dd at 40 last year having also miscarried a previous baby and I also declined any tests other than a nuchal scan, which reduced my age-related odds, but by much IIRC. The doctors looking after me clearly thought I was a bit odd/irresponsible, the midwives didn't.
The only thing I would say about amnio is that it does also provide a diagnosis for other chromosomal abnormalities such as Patau's and Edwards's syndrome. These almost always lead to stillbirth/neonatal death.
If you decline amnio it might be worth making doubly sure that your 20 week scan checks carefully for markers for either of these conditions. They usually cause serious physical problems in the baby so can often be spotted with ultrasound.
I would have had an amnio only if my scan had suggested Edward's or Patau's. But they are both RARER than DS.
So glad to hear you have your dh's support, it makes a big difference doesn't it. We were united on this point too.
I love France such a lot but my perception is that awareness of and acceptance of disability is not as well developed as in the UK.

frogs · 18/07/2004 13:10

Poor you, gglimpopo, what a lot to deal with.

FWIW, you're certainly not the only one to decline all testing, or to want to go to term with a pregnancy after problems have been detected.

My sister carried to term a baby with trisomy 18 (Edwards' syndrome), which is invariably fatal, usually within six weeks of birth. She was under strong pressure to have a late termination, but with hindsight still feels that she made the right decision, and that the time we all spent with her little boy was precious despite his disabilities.

With that family history (I also have a cousin with DS), my own decision not to have any ante-natal testing came under heavy fire during my own pregnancies -- I'd be taken aside and made to wait until they got the consultant himself to come in and persuade me of the error of my ways. There seems to be a very strong medical presumption that because we can find out something, we should find it out, and that we have not an option, but a duty to prevent a child that is less than perfect from being born.

It made me very angry, in the end, and very cynical -- why is it assumed that the lives of those of us who are genetically 'perfect' (ha!) are the only ones worth living? Why is it assumed that an induced labour and stillbirth at 24 weeks is 'easier' than giving birth to a child with disabilities? I'm genuinely baffled by these attitudes, and found the pressure to conform to the orthodox medical viewpoint depressing.

gglimpopo, it is the doctors who are odd, not you. Your baby is 90% likely not to have DS, and if it does then it will still be a beautiful baby that happens to have Downs. Hope things turn out well for you.

bundle · 18/07/2004 13:26

ggglimpopo, I had amnios with both my pregnancies but that was because I would have chosen a termination if I hadn't got the result I'd hoped for. with the 2nd pregnancy, I had a blood test which suggested a higher than usual risk of Edwards syndrome, and unlike frogs' sister, I would have chosen termination rather than go through a full gestation. it's very personal. but it sounds to me as if you have already made your mind up what you'd do, and I'm really glad you have your husband's support. best of luck. (ps another friend had a miscarriage after her amnio, so that is something else to factor in)