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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

Original poster

Just had a phone call to say I have a 1:50 chance of having a baby with downs syndrome

73 replies

cece · 01/11/2007 19:00

Midwife has bombarded me with extra tests I can have but feeling a bit shocked. Not sure what to do? Anyone had something similar who can share their stories please?

OP posts:
karen999 · 01/11/2007 19:06

Actually not me personally but this happened to a friend of mine (who was on baby no 4) and her baby was totally perfect!! I felt so sorry for her that she had to go through all the worry for nothing...she took the extra tests that they offered but it was still a nightmare for her and her family.

CantSleepWontSleep · 01/11/2007 19:06

There will be lots of people along who've been through this I'm sure, but remember that you have a 49:50 chance of not having a baby with ds .

Original poster
cece · 01/11/2007 19:08

I know I wish I hadn't taken the screening tests now

I don't think I want to take anymore tests. I have a feeling DH is going to want me to - this is going to be difficult.

OP posts:
NAB3sparklesandflashes · 01/11/2007 19:09

It depends what you would do with the information. You have had a shock and you need to take stock.

Take care.

lisad123 · 01/11/2007 19:12

I would agree, depends on what you would do with info.
Will more testing cause you more stress and worry than already and would it change you view of continuing with pregnancy?
No testing is 100% sure, please rememeber that. There is a posting on special needs from a lady who was told 1 of 5000 chance (or something like that) and had a child with DS this week. Maybe ook at her post.

Good luck

pinkteddy · 01/11/2007 19:15

I had similar situation, not with blood tests but with 20 week scan - they found what they called 'soft indicators' for downs and/or edwards syndrome. How many weeks pregnant are you? You can asked for more detailed scans instead of invasive tests in the first instance. If your hospital hasn't got the equipment you are entitled to be referred to the nearest hospital that does. I had more detailed scans and consultant told me that in her view there was less than 1% chance that baby had anything wrong. So I didn't go ahead with the amnio. DD was born fine btw.

TheDuchessOfNorksBride · 01/11/2007 19:15

I had a shock 1:80 with my 3rd DC. I had previously had 1:2000+ and had all 3DCs in less than 3 years so my age wasn't really a factor.

We declined amnio because the risk of miscarriage was almost as high. We would have gone ahead with the pregnancy if it had been Downs anyway.

At my 20 week scan the sonographer paid particular attention to the spine, head formation, facial features and said as far as she could tell it all looked fine - obviously that's not brilliantly accurate but I felt slightly better for hearing it.

I had a lovely home birth but admittedly, the first thing I looked for in my new baby was not the sex but if anything was wrong. And it wasn't.

My neighbour had an incredibly shocking 1:2 chance but her little girl was absolutely fine.

You need some time to discuss the options, look at how accurate or risky each test is and weigh it up against what action you would be prepared to take. It is hard. Best wishes.

violeta · 01/11/2007 19:16

Hello cece,
I know it's a very worrying time. I'm now 24 wks and got a 1/240 after the blood tests (just within the boundary of 'high risk') and did lots of research about it. In the end, I had an extra anomaly scan at 17 weeks where they looked for markers which showed that all was fine, so didn't do anything else. Your age will be a factor - how old are you? What's the average risk for your age? Also, the blood tests measure HCG levels and PAPP A levels. I recommend finding out what was high and what was low for you and talking through everything with your midwife/a consultant. They may come out with a number, but they should be able to analyse what they found for you as well. I found out that babies with DS often tend to have high HCG and low PAPP A levels but a different combination of these factors may well come out as high risk but that's because the figures are different from the 'average'. The research into the nasal bone is interesting as well - suggest you also look into this.
But, whatever you decide to do, all the very best.

DarthVader · 01/11/2007 19:24

This is a low chance.
Relax and enjoy the pregnancy! Too many tests just make you anxious for no reason imo.

I felt blessed to be carrying a child and if she had downs syndrome I would have felt the same way. It turns out that I was carrying a special needs child - my child is dyslexic. She is the greatest kid that walked the planet in my eyes...and so will your child be.

Original poster
cece · 01/11/2007 19:26

Thank you for your replies.

I am 13 weeks tomorrow and aged 40 at the moment. Will be 41 by the time lo is due. My age risk on it's own is apparently 1:85.

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Lulumama · 01/11/2007 19:29

agree with everything that has been said, esp. Darthvaders points...

odds are 49 to 1 your child won;t have downs syndrome, any invasive tests should be considered carefully..

have a read of Teecee;s and Eidsvold;s posts about having a child with downs syndrome, they are uplifting and amazing stories.

Original poster
cece · 01/11/2007 19:33

I am more concerned that DH and I aren't going to agree about this. I feel I don't want anymore tests as I wouldn't want to abort a baby. I think DH will want to know - so will push for me to have the tests and then act on the results.

Once the kids are in bed we need to talk

OP posts:
Lulumama · 01/11/2007 19:35

ARC is a good resource for this sort of thing

pinkteddy · 01/11/2007 19:37

you can still have a nuchal scan which will give you more of an idea. Your age is probably the reason the risks are coming up very high. I still vividly remember how stressful the whole thing was and dd is now 4. Take care.

pagwatch · 01/11/2007 19:52

I had DD at 40 and my starting 'odds'were high. I refused any invasive tests as DH and i were agreed that we were going to have our baby regardless of any potential special issues.
We had full scan at 20 weeks where the odds lengthened considerably once nuchal fold test done and soft signs checked.
( My DD was born with no difficulties and is a healthy happy 5 year old.)

Like yours my DH was also more keen to know what we would be dealing with - in a very 'lets make a plan' kind of way. We also wanted to know what the possible outcomes were so that we could give our other DC good quality information and prepare them, as it were.
i already have a son with special needs so my understanding of what would be involved was substantial. Like you i also knew that liklihood of problems was higher as i was an older mum. I know others have stressed the 49% chance that all is 'normal' but I personally think you should inform yourself about that 1% chance so that you and DH are on the same page.
My sons special needs are severe and lifelong but i know that however hard it has been it has been one of the greatest experiences of my life - this extraordinary child of mine. He equally enriches the lives of his siblings and his extended family. But to have coped with his needs whilst DH and I were in a state of dischord would have been unbearable.
So you do need to speak to DH and talk through all the what ifs.
Final tip. i honestly believe men take longer to process than women so you might want to consider letting the dust settle before you try to talk it through. Give your self a little breathing space. And try to be kind to each other.

violeta · 01/11/2007 19:53

I remember how stressful it all was as well. And I think the way the hospital tell you about the results(over the phone)and the language they use ('high risk') doesn't really help.

frogs · 01/11/2007 19:58

Oh love. I am so sorry you're having such a worrying time, but as others have said, the chances are 49:50 your little one will be fine.

I think the only thing to do is to work out for yourself what you would do with the info from an invasive test, and whether the accompanying risk of miscarriage is acceptable to you.

If you feel strongly that you would terminate for abnormality, it makes sense to have the tests. If you feel that you would want to keep the baby (and there are several posters on MN who have written with amazing eloquence about how their children with DS light up their lives) then further testing may well not make sense.

I hope you can find a resolution that works for you (and do bear in mind your baby is 98% likely not to have DS).

Hugs.

lennygirl · 01/11/2007 20:02

Message withdrawn

crumpet · 01/11/2007 20:04

I had a 1 in 62 with my second, and did opt for a CVS as the risk of miscarriage was lower, and I couldn't bear not knowing for months, despite the actual percentage risk being so low. Deliberately did not think about what I would have done if it was confirmed, so can't say what I might might not have done - but to be honest I don't think I could have had a termination. Reading over the years about Thomcat's Lottie will have had a lot to do with that...

We went to Nikolaides at the Fetal Medical Centre who were quick.

Original poster
cece · 01/11/2007 20:24

The midwife said the CVS was 1:150 risk of miscarriage. I would go to St Georges in Tooting - never heard of it - miles away...

She said the amnio at 16 weeks was less risky - the consultant has 1:250 or even 1:300 chance of MC. That would be at my local hospital.

I guess I need to make a decision quickly as will have to have CVS done by next Friday. If I decide to go ahead with that particular test.

I'm not sure I can live with the MC risk though..

OP posts:
frogs · 01/11/2007 20:31

cece, sounds to me as if you're edging towards the view that you wouldn't want a termination. Just to let you know that is a perfectly legitimate attitude, and if that is how you feel, you should know that you're not alone in feeling that way, even though medical professionals may view it as unusual.

I had no screening tests with any of mine, even though I was 37 by the time I had my third, and had a close relative (sister) who had a baby with trisomy 18 and a more distant older relative with DS. You get some odd reactions from medical staff and others, but if that is how you feel, don't let anyone freak you into feeling that you're unusual.

I found it helpful to remember that my baby was who it was already, and no tests would change that. (This is obviously not intended as a comment on the choices of anyone who feels strongly that they would want to terminate for abnormality).

xx

Janbo25 · 01/11/2007 20:34

I don't want to panic you but a friend of mine was in the similar situation to yourself and chose to have the amnio, which unfortunately resulted in the miscarriage but worse of all they confirmed that the baby was 100% fine.

But obviously we don't knwo what your current situation is and you have to take everything into account before making your final decision.

Good Luck xx

pinkteddy · 01/11/2007 20:50

If you are going to have an amnio do your homework and find out which hospitals local to you have the best results. The more a consultant does the procedure, the less likely they are to cause MC. Ask about the nuchal scan - not invasive.

Original poster
cece · 01/11/2007 23:01

I had a nuchal scan and a blood test this week. The nuchal scan was average 1.6 mm so this higher risk must be based on the combination of age, blood test and scan results. I have some questions now for the midwife tomorrow and think I will go to see the consultant on Monday as she said I could if I wanted to.

OP posts:
fortyplus · 01/11/2007 23:06

You know how there's supposed to be a 1% risk of miscarriage for amniocentesis?
What they don't tell you is that's an average and the rates vary tremendously from one consultant to another. If you're within travelling distance of Herts then Yunus Tayob apparently has an almost zero rate. He works both in the NHS and privately.

BUT... you also need to ask yourself - would you abort the foetus if the test was positive? If not then not much point having it imo - you'd be putting the baby - whether Downs or not - at an increased risk of mc.