Waiting for CVS - scared, worried & confused

[ruthietoothie]

I am 14 weeks pregnant and had my dating scan last thursday. They found a high NT reading of 3.9mm and got us seen by fetal medicine the next day. We had the CVS on Friday and they did an additional scene (NT readings still high - 3.7/3.5) and now it's just the wait for the results...)

I feel so scared and confused for what they will bring. We have no idea - really - what we'd do if the news is bad, and I feel like there's no one I can really talk to about it all except my partner. We haven't told ppl about the pregnancy yet (were waiting till after the scan), but now the news is potentially bad, and so don't know what to do... especially as I'm now starting to show.

To top it all, it's obv half-term week so we got the other kids at home with no idea what's going on and are supposed to be off camping with them tomorrow.

Sorry to vent, really, just feels very scary and lonely too!!

You have my sympathies, waiting between appointments and for results is torture. Maybe the kids being off will help distract you. Good luck, I hope the results are good.

Thank you Nichola, like you say it's the wait that is just horrid... I was all right over the weekend, but now that I know the results are likely tomorrow I just feel totally anxious and sick.

I’m also waiting CVS results after a nt measurement of 3.6mm. I had the scan last Wednesday and they did the CVS the same day. We were devastated to hear we have a 1 in 2 chance of the baby having downs. They could also see something wrong with the heart.
It’s a really tough weekend waiting for the results. I hope to get them today, the waiting is just awful.

Sorry to hear you are also waiting for news brighteryear. It's so difficult waiting. Hope you don't have to wait too much longer, and the news you get is positive

I had an NT of 3.9 and 1 in 5 risk of Downs so I know what you're going through. My results came back all clear but the waiting was awful. As you say, I couldn't work out what we'd do if it was positive and I was driving myself crazy with googling to convince myself baby was fine. In the end I was so stressed I was feeling dizzy by the time they called me.

I hope the results are quick for you. I had my CVS on the Friday and got the results on Tuesday morning (not a bank holiday weekend) which was sooner than I expected but the waiting felt like forever. Thinking of you both xx

The results have now come through and sadly its been confirmed our baby has Downs. We’re devastated, it took 2 years to conceive the baby.
I hope you don't have to wait much longer ruthie and you get good news.

Sorry to hear about your result brighter. Thinking of you xx

Sorry to hear that brighter.

Hope you get results soon Ruthie and it's good news x

Please don’t make any hasty decisions should your results come back positive for Down syndrome. I had a postnatal diagnosis following the birth of my little one last year (first baby, low risk pregnancy). Yes our journey is going to be a little different to what we were expecting but nothing in life is guaranteed and he amazes us every day! Any baby could have learning difficulties, epilepsy, autism etc...and you wouldn’t know until the baby was here! Sending you best wishes for the results you’re hoping for x

So sorry that you're in this place, OP.

I've been there 3 times and it is a nail-biter, to say the least.
I had 2 consecutive DS pregnancies.
Our decision to not continue with either pregnancy remains indescribably heartbreaking.
Hand-holding, OP. And you just don't know. Your news might be very happy. But the wait for the news is unbearable. Best of luck to you. May your news only be positive!
brighteryear may you live out your username and find great joy and light at the end of this terribly sad time. You have every ounce of my sympathy.

Thank you for your lovely replies.

I just wanted to let you know you are not alone. Many people have walked the same path and people go different ways in their journey. We had a 1:2 chance that our daughter would have DS and we were devastated. Devastated for her, for us and for her older sibling. We had already decided that we would not consider a termination and I am so glad that 5 years on we made that decision. Beth was born a few weeks early and she required heart surgery at 6 months (which is considered routine surgery and has very good outcomes). It wasn’t without its difficulties but we came through it stronger and support and help came from so many places we didn’t know existed! Now those early worries are a distant memory and we couldn’t be more proud of our daughter for who she is. She’s starting at her sister’s school in September and the school have been amazing in making arrangements for her. DS has taken us on a different path but it is not a lesser one and it’s dotted with wonderful experiences and we have met so many wonderful people. The DS community is a fabulous diverse network across the country and we feel privileged to be part of it. That’s not to say we don’t have challenges here and there but I think that’s just part of being a parent. You may want to check out www.positiveaboutdownsyndrome.co.uk for stories about what it’s like to love a child with DS. I just wanted you to know that you will be supported by all those in the DS community who actually celebrate when another child with DS is born because we know what love and joy this new life will bring.

Such a scary place to be.
I was there 4 years ago. 1:5 rosk of my baby having Down’s syndrome or one of the other trisomies.
When he was born he was examined and deemed perfect. He is perfect. He also has Down’s syndrome. No health issues.
By far the easiest of all my children.
No one in the DS community ever dreamed they would be here. All cried and grieved for the child we hoped we would have.
I can promise you one thing...if you have your baby he/she will lead you to a more fulfilled, happier life.
My son goes to mainstream nursery, will go to mainstream school. Is popular, funny and the most loving little boy you could hope to meet.
He is not the exception. I belong to a huge online community. Almost without fail parents and siblings would not change their child for the world.
Someone above has suggested positiveaboutdownsyndrome. A fantastic site to see what life is really like when your child has Down’s syndrome. Far removed from outdated information you will be given by NHS and ARC.
Good luck with your results x

Thank you for your stories and for the insight into life with a DS child. It’s inspirational to hear. We never thought we would be in this position and facing the toughest decision of our lives.
I hope you receive good news Ruthie.

When I run midwife training sessions in hospitals and universities, the first thing I tell them is that they should never say sorry to the parents because there's nothing to be sorry about. Babies with DS are a source of joy and a cause for celebrations just as much as any other baby, and they continue to be so throughout their lives just like any other family member.

Brighter year, best of luck with making your decision. It must be incredibly tough & I hope you have lots of support around you atm. Do take care.

We found out middle of last week that the results from the CVS were all clear, but are still being closely monitored as they concerned that the high readings from the scan a marker for something else. So more waiting. But feeling hopeful too.

Thanks for all the support everyone

@ruthietoothie glad you got the all clear from the CVS, great news! The next few weeks are still stressful as you wait for the detailed heart scan but fingers crossed you will come out smiling the other side xx