High Risk for Down Syndrome/Edwards-Positive Stories needed please!

[MumOfMiracles]

Hi lovely Mummy's, really need encouragement today, this is my 3rd pregnancy and after a really wonderful 12 week scan seeing my sweet baby. Got a call 2 days later to say I am high risk for Downs (1 in 143 chance) and Edward's (1 in 243) For my last 2 it was 1 in over a thousand so this really came as a shock! Not only that I have low Pappa-A so am taking aspirin every night to support my placenta. Keeping all this quiet from friends and family as I don't want the pressure of keeping them posted and dealing with their reactions to the news. So feeling very overwhelmed right now emotionally and have opted to take the Iona test on Monday (NHS version of Harmony) to get a better idea of what my chances really are.

Positive stories or any words of comfort or encouragement would mean so much right now.

Thank you! xx

Mine is 4th May, guessing yours will be around that time too or June? 🤰🥰

19th May 🙂 So thankful my partner can come to this one. I might do a private one at 16 weeks just to check in xx

Hi ladies, hope you are all keeping well. Had a scare this morning and passed a blood clot when going to the bathroom, a little blood. Enough for me to want to get checked out though, thank God baby girls heartbeat was going strong! So was sent home, booked in for a private scan tomorrow night as want to make sure all is well in there. As I have low papp-a too, will be good to know everything is as it should be. Anyone else experienced this? xx

Glad the babes is a-ok. I had some blood around 9 weeks across 24 hours. Nothing since then. I do think it's very very common.

I'm really looking forward to feeling kicks. I'm also really want to see my baby on the scan again - think I might book another one :)

I my first pregnancy with my now 4 year old, I had I bit of bleeding every month around when my period should be up until the 6th month mark. It was just one of those odd things. Definitely worth getting checked out though. Hope your scan tonight goes well.

@MumOfMiracles sorry you’ve had this scare! If it’s any reassurance I had this as well and have a healthy baby. I understand it happens in approximately 1/3 of pregnancies and is usually nothing to worry about xx

My beautiful girl! Had a private scan tonight and she is doing great! Happy, healthy little baby. 🥰

@MumOfMiracles I am so pleased to hear that. xx

Looks like cutie pie! x

Aw thank you @summerhillgang! If you can would definitely book for a private scan if you are itching to see little one before 20 weeks. So reassuring! xx

Could find out the gender from 16 weeks too! 🥰

Great to have it confirmed that we are expecting a girl. 🥰

Will go again at 26 weeks for bonding scan as did it with my other 2. Would really recommend that! xx

Hi @summerhillgang, just a message to see how you and little one are doing? Did you go for a private scan in the end? Take care xx

Hi everyone! I had my scan last week, currently 14-1 weeks and the NT was 1.7. I got a call from the screening midwife today and was told i’ve come back as high risk with a 1 in 135 chance. I was absolutely distraught, cried all day. Went in for the NIPT this afternoon and have to wait a full week for results. My pap-a was lower than usual and the HCG higher than usual (abbreviations may be wrong haha) but was in such a state I forgot the numbers. The midwife said it could just be my hormones are off but with someone who suffers from bad anxiety, I don’t know how i’ll be able to relax over the next week!! ☹️ reading this thread has been reassuring but my husband is offshore and I’m struggling to be positive xx

@Sduguid25 so sorry you are feeling like this . I am 38 and I have just found out I'm 4 weeks pregnant. I am already worrying about what my risk is going to be and how I will respond to the dreaded phone call. Just wanted to say you are not alone if you need to chat we are all here for you ! X

@Gummybear17 Congratulations on your pregnancy! I will keep everything crossed for you. I appreciate your message so thank you. I think the worst part is the unknown and waiting for the results. I keep telling myself if I was 1 in 150 they wouldn’t have even called me but its so hard to stay positive because there is still a higher chance xx

@Sduguid25 please keep us posted. Got everything crossed for you ! Xx

@Sduguid25 I am so sorry you are going through this.The uncertainty is horrid. I hope this week goes quickly for you.

1 in 135 is really in your favour, so there is hope there. There is only a 0.7% chance that something is wrong. The combined screening really is just an indicator, which can often be wrong.

I will be keeping everything crossed for you.

Hi @Sduguid25, so glad you reached out on here, remember the feeling well or nerves as you wait. All here for you and I honestly agree with @Mummy2O that your odds look really good to hear all is well. Already such a small percentage chance and I believe it will come back from your next test even smaller! Try to stay busy much as possible and take it easy when you need a rest. We are all hopeful you will soon update us with great news! Much love to you and your precious little one. xx

@Sduguid25 just checking in . How are you getting on ? X

@Gummybear17 That’s so kind, thank you! I am certainly feeling much better today and more positive. I never though of it like a 0.7% chance so thanks to you lovely ladies I feel better. We’ll just need to try keep positive and take each day as it comes! Thanks ladies, your support is so appreciated xx

@SarahD19

Hey I had high risk results (although higher risk than this) with my most recent baby. I was high risk for Edwards and Pataus. I had CVS and Amniocentesis due to very complex results. Long story short, I know have a completely healthy baby.

A word of warning is that NIPT throws up a lot of false positives for Edwards especially. It is only actually 37% accurate at positively predicting Edwards - many people, practitioners included, are not aware of this.

If NIPT is negative then that holds quite a lot of weight as false negatives are more unusual than false positives. Good luck with everything. It can be a scary and isolating time x

Hello I hope you dont mind me gatecrashing. I was interested in what you said about the edwards thing with the nipt test. My screening came back 1 in 90 for downs and 1 in 5 for edwards/patau. Nt was 2.2 but papp-a very low at 0.19. Doctor told me its probably edwards due to baby having an exomphalos containing bowel only. I went for the iona test and it came back 2 days ago as clear for downs and patau but over 95% for edwards. To say I'm devastated is an understatement. They were pushing me for termination but I requested the amnio which is booked in 2 weeks. I've lost all hope but then I read this thread and the info about nipt with edwards. If I'm high risk for edwards does that mean babys more likely to have it?

Hi Kelly, that is great you are reaching out for support and advice. All here for you any time you need to vent or reach out. It's such a tense wait so please know you are not alone. All rooting for you and your sweet baby. Lots of love xx

Thank you that means alot. I'm just hoping for a positive outcome but the odds aren't in my favour