Awaiting CVS results 1 in 8 chance DS

[Mya2021]

Hi All,

Had a combined test done at my 12 week pregnancy scan they found my NT was 2.6mm and my bloods done showed 1 in 8 chances of DS. Had my CVS test done yesterday and awaiting results next week Tuesday.

Wondered if anyone is awaiting results for CVS tests? Or if anyone has had it done and had results back what was the outcome?

I'm trying to weigh up how likely it will come up negative!!

Thanks ahead for any comments and advice or answers.

[NoCallerID]

Oh OP, I'm so sorry you're going through this. It's a horrendous time. Have any of the medical professionals suggested the ARC charity to you? They're amazing. I wouldn't have been able to get through this time with their support. Sending you lots of love x

[serialreturner]

Been there @Mya2021

I'm so sorry. Be very gentle with yourself - your head will be spinning and that's ok.

Second ARC - at the beginning I couldn't talk to them, but the online resources are brilliant as a first step.

[Simz01]

@Mya2021 oh I am so sorry to hear that. I imagine there is so much going on in your head right now.

Please feel free to reach out as you need on here or privately. Am thinking of you and here for you.

I also recommend ARC. I called them prior to my CVS after the scan xxx

[curliegirlie]

Hi @Mya2021 I’m so sorry you’ve had to deal with the shock of a DS diagnosis. I got my daughter’s, postnatally, a few hours after she was born and it completely floored us. However, we’re now over 5 years into our journey, and she is an absolutely amazing child. She’s just started mainstream school, which she’s absolutely loving and is doing so well. She’s currently watching nursery rhymes on YouTube and singing along to them! There’s some brilliant resources for expectant parent on www.downs-syndrome.org.uk/for-new-parents/being-pregnant/ as well as positiveaboutdownsyndrome.co.uk/, which includes stories and experiences from parents and family members in lots of different situations. Take care and I’m happy to answer any questions you have about life with that extra chromosome.

[Mya2021]

@Simz01 @curliegirlie

Thank you both for your kind words.

It's come as a shock more so as I was hoping for better news. I think it was more shocking because she said "we knew the chances were high" I still had hope which anyone can do.

A lot to think and consider something very personal.

Thanks again for all kind words and support.

[disconnecteddrifter]

I'm so sorry for your news. As you know I made a decision to terminate very recently and it is something I am still struggling with. This is so hard, I think no matter what you decide. The decision is horrendous. Please let me know if there is anything I can let you know.

[Mya2021]

@disconnecteddrifter

Hiya thanks for your message really really appreciate it.

Can I please ask how many weeks you were and if I was to choose termination what procedure the surgery would be. I had surgery at 12 weeks last time but for a silent miscarriage so was slightly different as they only had to remove the pregnancy sac. And it was under sedation and I was done in 15 mins and literally went home same day. Slightly confused how this would work now? Sorry if it's to personal you don't have to reply.

Thank you

[disconnecteddrifter]

No it's fine and hopefully helpful to others too. I was 18 weeks to the day. I chose for a medical management and it couldnt have been better care. I had a room with a double bed which was made to not look like a hospital and there was lots of support from midwives and literature from others who had been in a similar situation.
The procedure was painful and heartbreaking as I didnt want to go through with it. I had gas and air and pethadine which I regret now.
I am still off work as I have only just delivered the remnants of placenta. But feel ok physically otherwise.
I am happy to take the pain of delivery in exchange for getting to spend the night with my little boy. I didnr think I would want to but didnf want to not have that choice and I got to take photos ans have footprints and the hospital made a memory box for me. I dont know what I would do without the photos now. However, recovery may have been longer not going for surgical (I wasnf offered it) but I'm glad I did what I did. I'm just struggling with lots of regrets. Maybe he would have been ok like curliegirlies beautiful daughter, maybe he would have struggled at birth like many others. Its something I have to live with now.

[curliegirlie]

@disconnecteddrifter please don’t feel bad about your decision. No one has a crystal ball for any child. You just have to go by whatever is right for you, using the most up to date information to help you make your choice. My heart absolutely breaks for anyone who decides to terminate, but ultimately it depends on the circumstances and you’re the only one who can judge that. Be kind to yourself xxxxx

[NoCallerID]

Hey OP,

Just give you the other side of TMFR management to @disconnecteddrifter....

I had medical management and birthed my baby at 14 weeks. I chose to do this for several reasons; one of them it being the only option at my hospital and I didn't want to go anywhere else. Plus I personally found I needed to make peace with it, see my baby and take photos and footprints.

If you do go for TMFR, think about what would work best for you emotionally and psychologically in the long run.

[disconnecteddrifter]

I felt the same as @NoCallerID I was grateful to have photos and time with my baby

[Mya2021]

@disconnecteddrifter @NoCallerID

What are the options available at 12 weeks + as I'm currently 12 weeks and 6 days.

I haven't spoken to my actual hospital yet so they haven't gone through anything with me yet. Assuming someone would know all options?

[disconnecteddrifter]

For nhs I think its medical only. If you want surgical I think you have to go privately but nhs can arrange that for you.

[NoCallerID]

@disconnecteddrifter sorry, I read your comment wrong, I thought it was surgical and didn't finish reading it. 🤦🏻‍♀️ I also regret the pethidine, it didn't help the pain it just knocked me out and I was emotionless when I woke up and actually delivered the baby. I couldn't cry. But gas & air was great. I also had issues with the placenta and had to have rpoc removed 8 weeks later. Yet I'd still do the same thing again.

@Mya2021 it might even depend on the trust. We were told we'd have to go to an abortion clinic if we wanted surgical management and it would not be possible to have a post mortem, plus other things like better care in a potential next pregnancy. However in hindsight I'm sure we would still get the same care in a new pregnancy had we gone privat/to an abortion clinic. In the end we decided against a post mortem because it wouldn't change the diagnosis and we didn't need to know if there would've been further physical abnormalities than already known.
I'm also not sure how cremation is covered by other clinics. Our hospital covered all costs and we could choose whether to cremate our baby with other little angels or on his own. We decided to have him with some little friends so he wasn't alone. The service was a few days before lockdown and was beautiful. I just wanted to give all the other parents there a hug and tell them how sorry I was they were going through the same but covid didn't allow it...

[Simz01]

Thinking of you @Mya2021x

[Mya2021]

@Simz01

Hiya, thank you all for your kind words and messages and for sharing your personal journeys.

We had more bad news yesterday we found out that baby wouldn't make it if we choose to continue the pregnancy. So we will be having a termination.

To be honest I just feel so shocked saddened this has happened and so suddenly. I really wish this blood test was done earlier in the pregnancy.

I'm at peace with my decision as I spent all of yesterday crying my eyes out and blaming myself. Maybe I left it to late maybe 33 is to old. I dunno I guess I'll always have things flying round in my head wondering.

[Mollscroll]

Mya so sorry to read your story. I have a similar backstory - I had a TFMR at 16 for DS. It was a surgical termination done at BPAS or Marie Stopes (can't actually remember which as it was a long time ago). The procedure was fairly simple and relatively painless - I couldn't face the labouring route and this felt right for me. I cried every single day for three months after but never regretted my decision - obviously you don't have a decision to make in the same way but it's still hard.

I had previously had two MCs so things felt pretty hopeless. But I went on to have DD just a year later and DS after that. A lot older than you are now. You definitely haven't left it too late at just 33. You've just been very unlucky. Life is cruel sometimes but you will get past this.

X

[GetOffTheFrog]

I'm so sorry for the pain you are feeling right now Mya

I know other people have mentioned Arc - do give them a call, they are brilliant and really helped me when I had a medically managed tfmr at 17 weeks.

This is nothing to do with you or anything you have done. Nothing.

Sending you strength

[Mya2021]

@Mollscroll

Thank you for your kind words sending cyber hugs to all reaching out and being so kind.

I to have made the decision to get a surgical termination done as I don't think I can cope with the other option it would break me personally more then I am. Especially as I had a silent miscarriage only in March. I'm just very scared that what if the surgical termination leaves something behind and I have to repeat the process. As that's what happened with my silent miscarriage they removed the pregnancy sad but some tissue was left behind so I was on anti-biotics to clear it up. This time I got no clue if something gets left behind do they do another op or just remove with Anti-Biotics like last time. It's all very complicated to think of right now. But the decision I have made for surgical is the best for my mindset and I know I won't regret it.

Can I please ask how long your recovery took? Also you mentioned you went on to have DD what does that stand for?

[Mya2021]

@GetOffTheFrog

Thanks so much for your kind words it's so refreshing to hear such positivity and kindness in the word especially as Covid literally has ruined so many lives. I'm grateful for my health just keep thinking about the (what if's) but I guess that will go in time when I'm more at peace.

I have tried speaking to councillors after my first MC in March but it didn't help. What helps me most is the support of my family and husband. Their positivity helped me get through it the first time. Only is this time I didn't even mention I was pregnant. But I guess I'll have to notify them now.

Thank you for reaching out really helps talking x

[Mollscroll]

I don't remember the physical recovery being hard. A couple of days of tenderness and not leaving the house but that was all for me. The emotional shock took much longer to heal from.

But as I say, this was all a long time ago. DD (dear daughter!) is nearly 14...She was born less than a year after my termination (born prem hence a shortened timeframe). So life very quickly catapulted me into a new phase. And that helped hugely. I always say on these threads I only think back to what I went through then when I share the story on here in case it helps anyone. I'm fully healed and recovered. I carry no scars other than a sorrow for the woman I was then who had to go through that.

Wishing you peace and strength.

[GetOffTheFrog]

Sounds like you have made the best decision for you. I know I would not easily agree to another medical management. It was my only choice at the time and it was very physically hard as I had complications after the delivery.

Keep talking to whoever you're most comfortable talking to.

[mrsof20118]

Hi @Mya2021 so sorry you find yourself in this position. I had a surgical termination at 13 weeks by the NHS. I'm happy to answer any queries you have if you wanted to pm me xx

[Mya2021]

@GetOffTheFrog @Mollscroll

Thanking you for kind words sending hugs and only good wishes across. Lovely to know there's such great women / men that are on here who support so much. Sometimes you don't even need a special councillor x

[Mya2021]

@mrsof20118

Hiya thank you so much for offering to help advice wise it really means a lot. I haven't told anyone yet only me and husband know so it's hard to get advice.

I'm worried about the Surgical termination the after pain, the recovery time & maybe something being left behind. I know this is a small percentage always but just so worried.

How was your experience & how long did the recovery take? How long ago was yours? Also did they tell you when it's ok to start trying again after?

Sorry I know I quiz a lot just will really help me