April 6 years ago at a 20 week scan I was told my unborn child had a hypoplastic left heart. We were then referred to Harris Birthright trust for fetal cardiac scans. ON doing the scan we were told our daughter had a serious but operable heart defect that had a very successful outcome - unlike hypoplastic left heart - it did not mean lots of surgery.
At the time the fetal cardiologist also told us that if our child was born without down syndrome it would be incredibly rare. he then offered us an amnio to be done with Prof. Nic. We refused because for us it would not make a difference to the outcome. At this stage I was 22 weeks pregnant with a little girl and we knew she was part of our family.
Our eldest dd(1) was born under 6 years ago and yes she has down syndrome - which I felt would be the case and dh said he just knew dd1 had down syndrome. At 8 weeks old she underwent two open heart surgeries to close the holes in her heart. She is now a very happy healthy almost 6 yo.
We now have three daughters - and dd1 is as much a part of our family as the others. She has always been very easy to care for - in terms of day to day care was much easier than dd2 who is nt. Dd1 is idolised by dd2 who wants to be just like her. In turn dd1 adores her two sisters. She recently started full time school - the majority in mainstream with plans to transition to full time mainstream school. THere are pics on my profile. Funnily the kids at school love her - all want to sit with her and be her friend. Her two sisters have not missed out by having a sibling with special needs in any way.
In my experience of people across the spectrum in terms of ages and abilities - people with down syndrome are able to live independently - they do marry, they do work, they do very well in mainstream schools.
We then again at 20 week scan with dd2 learned that she had a higher chance of also having down syndrome. We chose not to have an amnio and dd2 was born without down syndrome.
In speaking with lots of women who have had various types of antenatal testing - I find it helpful to ask what they will do when they get the information - to think about what it is they want to know by having the test and what they will do next. Sounds a bit harsh but I have met so many people who went for all sorts of tests and then when given the results were finding it hard to make the next step - whatever that step may be. I think the medical profession likes to test often without regard for what happens when the results come back.
I also looked at it like this - I did not need to know bad enough to risk losing dd1 to a miscarriage from an amnio. For other women - that risk is less than the information or reassurance they need.
Sorry I just read more - is it just the blood tests or was it a nuchal fold test as well. From what I have read the blood tests alone are terrible inaccurate - but tied with a nuchal fold test and a scan for a nasal bone can be more accurate. Fwiw - a hig nuchal fold measurement can be indicative of a number of conditions.
I think there are still pics on my profile