Risk of Down's Syndrome....how do you convert risk into a percentage?

[ButtonMoon]

I have seen somewhere on here that some of you clever boffins can convert the 1/? risk into a percentage risk.....how do you do it?

ButtonMoon, I'm so happy, happy that you have come to your own personal decision and therefore have some peace and can now enjoy your pregnancy. I'm happy that your attitude is so great and I applaud you.

If you child does happen to have DS, like you and your DH have said, it will not be the end of your world, not at all, but the start of an amazing journey where you will be privaliged to know the wonders and joy that a child with DS will bring you. Every now and then something will happen to make me feel a bit down in the mouth, where occaisionaly I would like not to be the ones who are different, I would like to know what it's like sometimes to not have a child with DS, but they are so far and few between. I can honestly say, hand on heart that I love my life, I adore, worship, and celebrate my wonderful, loving, giving daughter. I love that it's a massive celebration when she turns corners and when she manages to leap the next hurdle. She has made me, and all the people in her life better people. She's funny, bright, cute, naughty, strong, willfull, cheeky, socialable, healthy, happy..... My life, becasue of her, is fab and she is the best thing that could happen to me, and theat means that that having a child with Down's syndrome is the best thing that happened to me. Life isn't always easy, sometimes I have to fight, sometimes I feel sad but most of the time I'm just really bloody lucky. I've said it before and I'll say it again now, I wouldn't change one single thing about Lottie.

Anyway, I'm just so, so pleased that you have made your decision and so, so pleased you have such a great attitude.

Keep in touch please won't you.

Much love TC xx

PS have a fab pregnancy, that baby is very lucky to have such a fab mummy & daddy

I was very, very grateful that, in my area, nuchal fold scans were on offer. I was at high risk of having a baby with a neural tube disorder such as spina bifida, plus I was 34 so highish risk of Downs. Nuchal fold scan was helpful because the Down's risk dropped dramatically from the average for my age to 'what is likely for this pregnancy'- very reassuring. And although it can't exclude NTD, the sonographer did say everything was fine as far as she could see at that stage. Anomaly scan even more reassuring as thank God ds did not have a neural tube defect. Also had further scan for heart defects. At each scan, sonographers or the relevant doc explained what they can and can't predict, the margin of error, etc. etc etc. - for instance, some heart defecs aren't detectable at 20 weeks or before birth.
I honestly don't know/didn't know what decision we would have made had we been unlucky enough to discover my baby was at high risk of NTD/Down's/heart defects. Would have considered amnio for Down's, I suppose. And seriously considered termination for NTD, although God knows whether I'd have been able to do that at 20 weeks pregnant. But I wanted to know, so that I could consider my options/be prepared for having that child if necessary.
The thing that worried me about Down's wasn't having a Down's 'baby', it was 'what would their life be like as an adult'. My sister works with people with learning difficulties and I know there is a huge range of ability/difficulty with many conditions. But there is pretty consistent discrimination and a lack of proper care.

Ask a person with DS what their life is like as an adult and they'll tell you it's brilliant. Ask a parent of a child or adult with DS do they regret having them and I bet the vast majority would say 'no, of course not'.

I don't consider anyone unlucky to be carrying a child with DS and it saddens me that people do still feel that way. What's sad /unlucky about having a child with DS?

That's not directed at anyone, just me sounding off and expressing myself and being honest. Not having a go, nobody has to answer my questions they are just my thoughts really, so...

I am just going to share my experience. I have two dds. One who was born in 2002 and one born last year.

With dd1 - they picked up her heart defect and told me that she would 99.999999999999 % also have down syndrome. It was very very very rare for people to have her heart defect and not have down syndrome. I was very lucky - the cardiologist told dh and I that if it would not make a difference - don't have an amnio - even though it would have been Prof Kypriades doing it at the harris birthright trust. We had already decided dd would be born when we thought she had a different type of heart defect. Whilst we knew having a child with ds would be hard - bloody hard sometimes - we also had positive experiences to draw on in dealing with down syndrome.

After my dd1 was born and even now almost three years later - the first thing any new medical person asks is - did I know she would be born with down syndrome. When I say yes - they have no reply. Some seem surprised that we chose to have a child with ds. To us - we chose to have a child. The only antenatal testing I had was a gtt and the ultrasounds.

Even when we were enduring her two open heart surgeries and all the stress that came with the recovery and the therapy etc. We do not regret our decision to have her. Even when she is being a typical 2 yo and throwing a tantrum with the best of them. SOme days are hard, some are heartbreaking and others just blow your mind and make you realise what really is important in life.

Fast forward 2 years - I am pregnant again. The first consultation I have with a doctor in the UK - he starts to list the referrals he will be making - from a fetal cardiac scan to an amnio etc because I will want to know. I told him that I was not having any of those tests. He then asked me why I did not want to know about this baby and in a most patronising tone telling me that my risk is automatically increased compared to other women of my age of having another child with ds. This is all with dd1 sitting in the consultation room. I then told him we chose to have dd knowing that she had down syndrome. He then went on about her heart defect. I finally had to stop him and tell him that dd had a heart defect because she had down syndrome and there was no reason to suspect this child would have a heart defect.

When we went for the dating scan dd1 was with us and the sonographer asked if I would be having a nuchal fold scan - I said no ... to which she proceeded to go and look at and measure the nuchal fold anyway and tell me it was in the 'normal' range. I was speechless. DH just glared at her. She smiled nicely thinking she was doing us a favour.

I then had the midwife call me to set up my blood tests. I told her I would not be having any - to which I got a talk about how I should want to know if there was anything wrong with this child etc. I then told her that we chose to have dd downsyndrome and all. She then went on again. I had to finally butt in and tell her that we were not interested and I did not need her services. Largely as we were emigrating to Australia.

We arrive in Australia in time for a 20 week scan which picks up a very soft marker for down syndrome. We spoke with a genetic counsellor as to what that meant to our 'risk'. She told us and then suggested that we had the option of an amnio. I told her we did not with dd1 and so would not with this child. She totally understood.

The pushing for testing began again with a registrar who wanted to know why I was not having an amnio, why did I not have bloods done, nuchal fold etc. Again dd1 is in the room.

There have been medical professionals that could push people to do things with the manner and the way they choose to present things. Am positive - had I not been the single minded outspoken forward woman that I am - I probably would have felt compelled to have tests done. BUT I did some research and opted for very little testing - with no regrets. I know have two beautiful daughters who have enriched my life in ways I never thought possible.

Sadly the statistics show for example in 2002 when dd1 was born - more children with down syndrome were aborted than were born.

I have come across a number of adults with down syndrome who live fabulous lives - they marry, live independantly, work, socialise - all the things we do.

Sorry I realise this is a ramble but maybe you can take something from my story.

Thanks Eidsvold and Thomcat and everyone for sharing your stories - I needed to read them. I've been posting about my preg on the antenatal club sept2005 thread. I've a risk of my baby having a problem (sorry to call it like this but don't know how else to discribe it at the moment) - total risk of 1:210 - nuchal neck 1.9, age risk 1:260 & biochemical blood test & age risk 1:480 Another doc gave a risk of 1:20 when she measured the nuchal neck at 2.4mm but this has been cancelled by the other docs more experienced measurement. I will be having a second opinion with an extra ultrasound next week before taking an amnio decision. During my last preg my baby had a nuchal fold of 5mm. I was told to arrange my own checks at another hospital as the one I was at didn't do amnios or cvs. I had to do all the calling. Before the scan that showed the large nuchal neck the m/w said that I should make all my antenatal appointments upto the birth. After the scan I was told not to bother with making any appointments. I felt like we had been told to get lost - just because there might be something not right with our baby. When I rang later to have a check-up I was told that there were no appointments free until after the birth of our baby !!!!I asked if the doc could ring me back but she never did. I then changed docs & went to another hospital that didn't have this problem with possible abnormality. This was my first experience of being told to go away because they didn't want anything to do with our baby. I have so much respect for everyone dealing with this attitude on a regular basis. I had a cvs & amnio that showed that the problem was confined placental mosiacism so dd was ok (again sorry to use this term but only way I know how to say it). This time around I've decided not to have the cvs & only to possibly have the amnio so that we can prepare ourselves for what might lie ahead.