Cvs

[peggy120688]

Hi please can any one help me
I have cvs test yesterday after recieving news we have 1:28 chance of Down’s syndrome, I am 13 plus 4 days with my first pregnancy ICSI ivf it’s been a gruelling time with getting pregnant having treatment then having misscaried a twin and now this I feel so down
My level was 4mm and also on a scan they found a reverse flow of blood to the liver and very small or no nasal bone :-(( I have to wait till Monday for the results
Has any one had experience of this x

Hi @peggy120688 I’m so sorry you’re going through this. It’s an awful time. Have you thought about what you will do if your baby does have Down’s syndrome? Did your hospital give you details of the ARC charity? They have lots of experience of this situation and have a helpline you can ring, I found them to be very helpful.

Unfortunately I went through the same last summer and decided to terminate after getting a diagnosis of Down’s syndrome. My CVS results took 4 days to come back including a weekend in between (had the test Friday, got the result on Tuesday). Hopefully you won’t be waiting long.

@DinoGreen
Thank you for your reply and so so sorry to hear about your baby :-(
I really don’t know what I would do in my heart it would have to be down to what I am advised by the doctors but I just don’t know I just feel so lost I will let you know what happens thank you again

I had similar results on my scan and had a 1:2 result of DS and it came back positive. I have had other high results 1:4, 1:36 and both were fine however there was no issues on either of the scans but there was with 1:2. It's a horrible experience and I truly hope it's not bad news for you

@peggy120688 if you decide not to terminate straight away you will be offered extra scans including a detailed heart scan at 16 weeks (because DS often comes with heart problems, though not always). I really recommend talking to ARC, they are really helpful. This is their website and their helpline number is on there too:

www.arc-uk.org/

You must be going through hell, it was awful when it happened to me but I already have one child and we conceived easily, it must be so much worse when you’ve been through IVF to get here 😢

@champagneandfromage50 thank you did you go ahead with your positive result xx

@DinoGreen thank you I will contact them to get some help, I know every one in this situation or who has been through it must be torture I just worry we won’t get another chance as been waiting so long to get pregnant... need to just wait till Monday
Thanks again xx

peggy120688 no I didnt go ahead. I had other DC to consider and the potential impact on the family of having a DC with DS. I am fully aware that people go ahead and are happy with that decision. My older sister had a DC when her 3 other DC were in there 20s. Her DS ended up with DS. She was devastated, they didnt pick it up but she had different screening processes. She in some ways is fortunate to have older DC as her older DC are fantastic with there DB and offer a lot of help and support. However she will be carer for the rest of her life ...

@champagneandfromage50 I totally respect your desicion and to be honest I would probably have to do the same as my partner has MS although it’s at bay at the moment it’s another factor to
Consider.... it doesn’t rain it pours as they say😩 will update when I know more thank you again every one xxx

Don,t just listen to doctors they have often to be found to be very negative.How about looking up don,t screan us out campaign and th downsydrome association to hear from parents and families affected by DS. I have known many adults and children with DS and have a nephew. The abilities and the problems they have are very broad.

@peggy120688 what a very very tough situation for you. No-one can advise what you should do, but I would agree with pp who suggests checking that you have up to date info about Down’s syndrome Www.positiveaboutdownsyndrome.co.uk is well worth a look.
If you want to talk it through I am a specialist independent midwife & support families facing such situations and the consequent decisions, those who continue and those who don’t. Message me if you want my website address or just to ask a few questions.
Sending love xx

@Nanmumandmidwife thank you so much I would really apprichiate that if you could send over your website please thank you xxx

@june2007 thank you I will definitely take a look at that page xxxx

Congratulations on your pregnancy. I have a toddler who has Down syndrome (we had a postnatal diagnosis). If you have any questions please feel free to send me a message x

@Gilbert82 thank you so much, xxxx

@peggy120688 no problem. If I can help ease your worries a little I’d be glad to help! x

peggy120688 how are things?

Not good
Having medical termination tomorrow hardest time of our lives :-(((((((((((((

P120677 I have been there and it is truly awful. Hugs from me......

Xxxx