High risk, many ds markers, awaiting cvs results

[Aslan88evans]

Hi there everyone,
I really need some help. I'm having a really hard time dealing with outcome of cvs.
I'm on day one of waiting for results and it's just painful. My heart hurts.
Baby has 1:4 for Down's and 1:118 for Edwards and patau's
The baby seems to have a few markers for DS
NT 4.2mm
PAPP-A 0.21 Mom
Hcg 3.67
No nasal bone
Baby had a heart scan and heart valve on right side leaking too
I can't cope with stress of not knowing it's so hard and the thought of having to terminate. Just want to hear that everything might be alright.
I'm 13 weeks 2 days. I'm 31 years old.
I have a 11year old son who has autism.

Just to be able to talk to someone would be really helpful.
Thank you in advance

Sorry to hear you have had difficult news. Are you expecting a rapid result from the CVS? It sounds very stressful for you . Try not to step too far ahead, although knowledge of the heart scan sounds concerning. Have you been given the contact details for ARC?

Hi OP I'm so sorry you're going through this. Sending a hand hold. I empathise with you on the long wait, as over a month ago we were waiting around for tests results (different prognosis so I'm sorry I can't help with that part) and searching online for answers. It's a very tough time, but I agree with @dammit88 with stepping to far ahead.

I'd recommend giving ARC a call if talking about how you're feeling may help. They've helped me and DP with the struggles we're going through.

Sending lots of love and prayers for you xx

@dammit88 @misssC3025
Thank you so much.
The wait on first set of results is 3-5 days to determine wether baby has ds, Edwards or Patau's. Just such an agonising wait especially seeing as we have so many markers. I just feel hopeless and trying to be positive but feeling very depressed. The thought of what's to come is too much to bear. I have extreme sickness the majority of the time as well which just makes every thing so much worse. I will contact Arc today. I just pray that all is okay. They said that if baby doesn't have ds heart can be okay and isn't a major issue hopefully but is a marker for DS which could mean a problem later on.
Trying to get it all out of my head is very hard. Xxxxx

Hi OP, just wanted to say I'm sorry and I know how hideous it is waiting for CVS results. I've been there twice and I know how the wait is just agony. I've had both god and bad news with the results. I had a termination for downs and a heart defect last year. If you do have bad news and want to talk feel free to message me. I really hope that it is good news for you

@Aslan88evans i feel your pain -we had a NT of 4.8 and so we had a cvs whcih came back ok on the first part but not ok on the second part - we then had a amino which confirmed mosiac down syndrome and she also had a problem with one of her heart valves so we had a medical termination at 18 weeks in Nov - but whilst we were going through this we read lots of positive stories so hopefully yours will be one of them xxx

@Aslan88evans Sadly from what your describe it does sound very likely that your baby is affected by Down’s syndrome. The waiting and wondering is very, very hard.
I note that you say that your son has autism and realise and respect that you may feel that you do not have the resources (emotional/practical/financial) to cope with another child with difference. However, I frequently am contacted by women who felt that they were directed into having a termination rather than having been encouraged to take time to reflect and make the decision which was best for them. It is such a huge decision, so take the time you need. If you are not certain, could I suggest that you look at the organisation Positive About Downs Syndrome to get up to date information about the condition and it’s effects?
I am happy for you to PM me if you would like to talk about this privately. Sending love xx

Hi I’ve just had my results back for my maternal screening and it says I have a 1in 8 chance of having a baby with Down’s syndrome and 1 in 5 risk of Edwards and patau’s syndrome and the pappa is 0.05.Im really worried as they have prepared us for a not very good out come and praying there is little hope but have to wait 2 weeks for a scan has anybody else had similar results and been ok just looking for some positive feed back as devastated to receive this news.

@michellekettle22 it is a very difficult situation to be in. Can I ask why you are having to wait 2 weeks for a scan? Are you in the UK?

Hi the midwife told me this at the hospital and today I’ve started having spotting of rust and dark red blood so I think I’m loosing the baby now as I have miscarried before this pregnancy

Hello I have had similar happen last week 1:5 for Edwards and patau I have had a scan everyweek
Since 5 weeks and no concerns I refused cvs due to risk of miscarriage and just so scared of This happening. I paid for a private scan Friday and there was no concerns so far, just don’t know if I’m doing the right thing waiting 😭 I’m 14 weeks 2 days it’s so hard.