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Conception

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Original poster

Downs risk

25 replies

Loobyloo893 · 05/05/2014 14:12

Hi,
With my first child I was given a downs risks of 1in 5! Luckily after having a cvs we found out everything was ok and he was fine. Just wondering if anyone knew if having a high risk in first pregnancy would mean my risk would be high in a second pregnancy? Currently ttc and all I can think about is having to go through that again.
Thanks x

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Twobusyboys · 05/05/2014 14:18

Its a stressfull test to go through isnt it? Were you over 35 last time? I think this has a big impact on the results. So you may find you are high risk again. But at least you know everything turned out ok and it may just be that you happen you have babies with high nuchal folds or whatever.?

I know someone who had cvs both times. With a risk of about 1 in 150 each time. And all was fine.

Not sure i have been particularly helpful. Sorry. Hipe it all goes well for you.

Nosleeptillbedtime · 05/05/2014 14:23

Hi loobyloo, I 'm no expert but my understanding is that Down's syndrome is not heritable so from that angle you should not be at high risk with your second pregnancy just because of your experience at your first. The risk of down's does increase with age though so the older you are the greater the risk. I work in social care and there are growing numbers of people with Down's who need support due to women having children at an older age and due to better medical procedures meaning people with Down's living longer. So that is what I am basing my information on.

Original poster

Loobyloo893 · 05/05/2014 14:23

I was 26 at the time so was very unexpected. Worst week of my life waiting for those results!

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Nosleeptillbedtime · 05/05/2014 14:26

Two busy, I don't think being over 35 means you are at high risk, just higher than before. I was 39 when pregnant with ds and my risk came out as one in 3,500. I think the generalised figure is one in 100 at 40 years but there will be a lot of individual variance.

Original poster

Loobyloo893 · 05/05/2014 14:26

Thank you NoSleep. Haven't been able to find any information about whether there are links but the age thing does worry me which is why I'm hoping to fall pregnant sooner rather than later

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WipsGlitter · 05/05/2014 14:30

Age increases your risk, but more younger women have children with downs (because more younger women have babies). It can happen to anyone irrespective of age. Your previous high risk is irrelevant, you will get a new set of stats for this pregnancy.

Nosleeptillbedtime · 05/05/2014 14:31

It must have been really hard. Given your age though I think you would be unlikely to have a baby with Down's. I can sympathise with what it was like, the fuckers at my pregnancy support unit told me my pregnancy had failed. They have a policy of giving everyone a second scan (thank god!) where it turned out everything was fine ( they just hadn't read my notes properly and thought I was further along in the pregnancy than I was). But that week wait was hideous.
Why not have a chat with a midwife or gp if you want some further guidance?

WipsGlitter · 05/05/2014 14:37

Sorry, but to say "given your age I think you would be unlikely to have a baby with downs" is inaccurate and unhelpful. Yes the risk is higher with age but anyone, of any age can have a child with downs. It's not just 'older' mothers.

Lolly84 · 05/05/2014 16:52

Sorry to throw a different angle at you but surely it is not the worse thing that can happen. If your ttcing lots of things can go wrong or right at conception. There is a "risk" of anything no matter what your age is. I like the term chance rather than risk.

Having a nephew with downs has opened up my mind to the beautiful world of Down's syndrome and I would love to open up more peoples mind. We are lucky to have him in our life. If you spent 5 mins with my nephew this wouldn't be a top priority worry.

Original poster

Loobyloo893 · 05/05/2014 17:16

It's not the concern of having a child with Down's syndrome that worries me. It's the unnecessary worry and risks involved of being so stressed at waiting for the results. After having two miscarriages the stress involved with a cvs was more worrying for me than perhaps it is for others. Docs said my miscarriages were more than likely due to stress,so anything that causes stress for me during pregnancy would be a concern. But we wanted to know so that we could be best prepared to care for our child and any specific needs they may have. Please don't jump to conclusions.

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Lolly84 · 05/05/2014 17:37

From your post and responses to me it reads you are worried about Downs rather than the test. Sorry for jumping to conclusions but I did from the info u gave. Ttc comes with many worries, been exposed to Downs makes it the bottom of the worry pile for me. I'm 10 weeks pg and have my scan in 2 weeks and worrying about there even being a baby in there. I don't think the worry goes away so dealing with it is the best thing you can do. Oh and stressing stops conception too.

Original poster

Loobyloo893 · 05/05/2014 17:43

Not stressing is a lot easier said then done.

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Armadale · 05/05/2014 17:55

Hi Looby,

A couple of things:

Firstly if it is the worry of the tests and risk of a cvs that are weighing on you, perhaps consider a harmony test (you can google the nearest place) it will give you quicker results that have no associated risks, so might be worth the cost in your case.

Secondly, the doctor who told you your miscarriages were due to stress is a wanker of the first order and should be given a written warning for saying that to you at the very least.

Most miscarriages are caused by genetic problems. There is no evidence that stress causes the others. (NHS official stance on it here. )

I have spent a lot of time looking into this because I lost my first PG very late, and the sonographer said to me at the scan 'I don't understand, this baby has been perfect up till now, have you been putting yourself under a lot of stress' which was obviously something that haunted me, despite every other medical professional being incensed that they had said it. It took me a long time to stop blaming myself for losing the baby and I am so angry on your behalf that someone did this to you, too.

(A really helpful study was done looking at women who were pregnant when a close family member was killed in the 9/11 attack and whose risk of miscarriage after this event did not increase.)

Good luck trying to conceive.

Original poster

Loobyloo893 · 05/05/2014 18:06

Thanks Armadale, the harmony test will definitely be worth look hints for us. Thanks for that. X

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Nosleeptillbedtime · 05/05/2014 18:15

Wipsglitter, I didn't say it was impossible to have a down's baby at 25. I said it was unlikely. At 25 the risk is one in 1250 so it is pretty unlikely.

I perhaps could've have worded it as 'in the lower risk category' I guess but think saying I was inaccurate and unhelpful is a bit OTT.

Lolly84 · 05/05/2014 19:46

Can someone help me understand why you would spend money on looking for 1 thing ie Down's syndrome when there is plenty more things that affect the baby??

This is the bit I find hard to understand, especially when cvs is not compulsory?? Maybe I will never understand.

I know not stressing is easier said than done. I don't pretend to not be a stresser but think there are worse things to stress about.

Original poster

Loobyloo893 · 05/05/2014 20:02

Because once you have been through something once it makes it that much more prevalent in your mind. Yes you would go crazy if you worried about everything but once you get a worry in your head, especially when u have been through it before it's hard to let it go.
Just like those who have had miscarriages will always be 10 times more worried about it happening again then someone who hasn't been through it.

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Original poster

Loobyloo893 · 05/05/2014 20:09

And for many people having a cvs is about knowledge and being prepared not about wanting to end the pregnancy

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Katekate77 · 05/05/2014 20:13

I'm 28 and have recently had twins, one has Down's syndrome (she had 1:80 odds, her sister had 1:250000) I've been told that the risk in my next pregnancy is just the same as any other 28 year old, no more. It's a genetic fluke.

I'm 85% likely to have twins again though apparently (due to the amount of eggs I release)

Original poster

Loobyloo893 · 05/05/2014 20:15

Thanks Kate, it's reassuring to know its not linked

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bewleysisters · 05/05/2014 21:01

Good luck Looby.

Lolly this is intensely personal territory - people may see things differently to you and/or have had different family experiences. To answer your question, I believe this is because it is one of the most common chromosomal abnormalities.

YouMaySayImADreamer · 05/05/2014 21:08

Would it be an option for you to maybe not have the nucheal (sp?) scan/test at all? I have been thinking about this same thing myself since starting ttc. I had the nucheal scan and blood test in my first pregnancy, I am a worrier and also thought it would help me to prepare if I knew, even though I had no intention of terminating. Now I wish I had never had it.

I found that it only brought more worry that relief. I stupidly didnt realise you had to wait two weeks for the results and stressed so much during the wait. I had said that I wouldnt risk the cv if it came back high risk but I probably would of had to to stop myself worrying the whole pregnancy, and then the cv would have brought even more worry!!

Even if you found out that the baby had downs and you wanted to prepare, you would still spend your whole pregnancy worrying and stressing about the unknown. Whereas if you didnt test, but when baby was born it became apparent that your baby had downs or any other condition, you would just deal with it and love that child the same no matter what. That is what is important in the end, and knowing about it for the whole pregnancy would have no bearing on that outcome other than to cause unnecessary anxiety.

Good luck ttc

WipsGlitter · 05/05/2014 21:16

Hi katekate. Congrats! I have a son with DS and was told having him would increase my risk by 1%. Are you on FoD on Facebook?

x2boys · 05/05/2014 21:45

Lolly I appreciate what you are saying I didn't have the nuchal fold scan because to me I would have had my baby whatever the circumstances my son does not have ds but he does have a rare chromosome disorder that has likely caused his autism and learning difficulties whereas I chose to not have any tests and not have any extra worries during pregnancy I don't think it is fair for to expect everybody to make that decision also I have since learnt that a nuchal fold scan may have thrown up some soft markets for my sons condition but again this was my decision.

Lolly84 · 05/05/2014 22:12

Thanks for trying to help me understand.

bewley I know people are entitled to a difference in opinion, I never came on here to tell someone they are wrong I wanted to look at things from another angle. I think the language used in terms of 'risk' and the fact that a baby is 'fine' if it doesn't have Down Syndrome is quite 1 dimensional. Having a nephew with Down's syndrome, I wanted to offer another dimension that a baby can be fine when it has Down's syndrome. If anything I was trying to help Looby not worry.

Looby whatever happens enjoy ttc and wish you all the best

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