Hi

I am preg and just had first week scan - have been told that there are some potential problems and should have the further tests - the amnio and the CVS. I know that these carry a risk of miscarriage too. I am panicking about what to do - and more than anything want to keep the baby.

please help!

Hi Fi,

I hope you don't mind me replying and pointing you in a couple of directions. It might not be what you are looking for but our Learning Disability Helpline can offer a listening ear, information and support - you can reach them on 0808 808 1111.
Have you looked at some of the information in our Ages and Stages pages? You can find further information from Answer their website is http://www.antenataltesting.info/
It might not give you the answers you are looking for but it is a starting point....
The BBC website also offers information http://www.bbc.co.uk/parenting/having_a_baby/pregnancy_tests.shtml as do ARC http://www.arc-uk.org/parent.html
Best wishes,
Lucy

Hi Fi

what potential problems did they say that you had high risk for??

There is always a risk of miscarriage with either the amnio or the CVS.

it is always best to ask which consultant is carrying out the procedure as this can vary from hospital to hospital and consultant to consultant

Remember that even with the amnio or CVS there are no results that are 100%

I would say that as a parent of a child with a disability there is so much more help now than there was even 5 years ago and there is certainly so much more support out here than I ever could have imagined.

Please keep us updated. I will be thinking of you

Hope you don't mind my input....

Really, you need to ask yourself- and them- what are they testing for? Would you want the baby anyway if the baby tests positive for this? If you would still want to have the baby no matter what the results, don't have the test, there's nothing to be gained and it's a pointless risk to the baby. If they are testing for something so severe that you would consider a termination in the event of the worst news, then you need to consider your options. Get as much information as possible. In my experience, medical staff tend to stick you on a conveyor belt and tell you as little as they can get away with, possibly because too much information confuses some people, but for those of us who like to go in with our eyes open this can be frustrating indeed! If you push for it, they will tell you more.

All the very best with the baby!

Hi everyone - and thanks so much for your thoughts - I have had lots of time to think over the last few weeks and opted not to have the tests. I want the baby more than anything and if there are problems I will deal with it in time.
Having been speaking more to the family it emerges that my fathers uncle had DS - but in those days it was all brushed under the carpet. As you say Hannah - these days people get a lot more support.
Will keep you all updated - still a bit of time to go!

My daughter's 16 week anomaly scan showed that she has a 1:150 chance of having a baby with DS and was advised to have an amnio immediately, which she did. Fortunately all was well and our granddaughter is a healthy 14 weeks old.

If the scan had shown that the baby had DS they would have had a very agonising decision to make. As much as our daughter adores her DS brother, she certainly didn't wish to raise a DS child, but she didn't like the idea of abortion either. Thank goodness they didn't have to make that ghastly decision!

Hi Fi
I am a new mum to Joshua my 4 month old who has down syndrome, he was born with a duodenal atresia, asd and was born 6 weeks prem, he spent just 4 weeks in neo natel after having the duodenal atresia corrected, the asd has now closed and he is feeding excellently, with regards to his development, i dont see much diference at the moment between joshua and how my 7 yr old robert was at that age, just a few little differences i would say, i bonded with joshua just the same as i did with robert.
It really was a few anxious and stressful few months, but things have settled down now, Joshua and ourselves have and are being given so much support from outside agencies, family and friends.

I wish you all the best and hope it all works out whichever way, hope my experience has given you a positive view xxxxxx

Hello

I have just joined this site, and read your message which interested me as I was pregnant at that time.  I have recently had my second child, holly born on 23 nov 2008.  Holly was diagnosed with Downs Syndrome at 5 days old.  After the initial shock, we are as much in love with our beautiful daughter as we were/are with our son Ben who is 2 years old.  I had all the available tests first time round, as didnt know any different but chose not to on the second time, as we didnt want to have to make a decision, and were of the mind that 'those things happen to other people'.  This time we are those other people, and our daughter was born with Down Syndrome.  I am now so glad we did not have any tests, as it really doesnt make the slightest bit of difference to our feelibgs.  Holly is our daughter, and she is loved and wanted as much as Ben, and we will just get on with it and deal with things as they occur, the same as we are doing woth Ben every day.  She is a child and needs our love, care and protection, and she just happens to have DOwns.  I do not know what is in store for her, but then neither do I for Ben who is'normal'.  I cannot waste time worrying about what may never happen, as I do not want to miss out on just being with both my children and watching them grow and learn.  Holly is a tough little cookie.  Both our babies were IVF/ICSI but Holly was frozen as an embryo at the same time as Ben was implanted for our first baby.  So she has survived a freezing for 2 years, and gone through the thawing, and implanting.  SO she is a precious little miracle, like her brother, and we are grateful for them both.