High risk for Downs Syndrome based on high HCG

[Babyy1]

Hi All,

I am absolutely devastated, following an ectopic and two chemicals last year, we finally got successfully pregnant in February this year.

Last Monday we went for our 12 week scan and combined screening. I got the call yesterday to say we have a 1:66 chance for Downs Syndrome and I feel like my whole word is falling apart. How can our little baby that looked so perfect on that 12 week scan not be okay.

my results were

NT 2.5
HCG 4.08
PAPP-A 1.56
CRL 58.6

I’m 31 years old so the midwife said that would play a factor in my result and said the only real concern was the 4x HCG, the rest she said were within normal parameters. I’ve had my bloods taken for the NIPT test and I’m awaiting the results.

The wait is horrendous. I keep looking at my scan picture trying to figure out if I can see any signs, which is ridiculous because I’m not medically trained and I have no idea what I’m looking for.

Has anyone had similar results to mine and everything turned out okay?

I’m so sorry! The wait is horrific.

I didn’t have a good outcome but I thought my results might give you hope as they’re super different.

NT 1.0
HCG 6.31
PAPP-A 0.32

we were 1:5 chance of Down syndrome (i think these probabilities should be abolished because they told us our baby was 80% chance of being okay when actually it was 100% not okay).

our NIPT was positive and CVS diagnosed us.

your hCG is elevated and you’re above 30. The computer literally just sees high or low, thinks ‘I’ve seen this pattern before’ And sends the alert.

your Papp-a and NT look in normal range.

after everything I read your results would give me hope - I’m obviously not medically trained and I don’t know what your result would be, but I thought sharing my results might give you hope as Down syndrome is shown from high hCG AND and low Papp-a

I hope it turns out okay and would love an update once you get your NIPT results.

also, I had my NIPT bloods taken on a Thursday and got the result late on the Tuesday FYI XXX

@CSSL7

thank you for your reply! And I’m so sorry to hear that yours wasn’t a positive outcome.

I keep searching for what the high HCG could possibly mean and I’ve read so many other people say they have had high HCG and everything turned out absolutely fine. It’s difficult because you don’t want to get your hopes up to be shattered again a second time around.

Praying for a quick turn around on the results. I will let you know what the outcome is 🤍

Hey @Babyy1 I couldn’t go past this post without commenting as I’ve been through this wait and it made me ill with fear and panic. I’m currently 31+6 with my first baby - I’m 40 in August. I had the quad blood test after my 16 week scan due to my age and it come back high risk for the Down Syndrome, Edwards and Pataus Syndrome. None of this was to do with my scan, just my quad blood test. They could not measure the NT at my scan and my CRL was 64.1mm. As this come back high risk 1 in 137 chance I then had the NIPT. The wait was the worst. I had the NIPT on Tuesday morning and got my results on the Monday. I was going out of my mind with worry; posting on here, Googling. I made myself ill! But I read so many positive stories on here and it kept me going. Try not to look into the HCG thing too much, it could mean anything. Try to stay positive and keep yourself busy. I’ll be thinking of you, I know how difficult this wait is and I hope it’s positive news for you xx

After all my reading I learned that some people just have hCG levels! It may not mean anything.

it’s linked with Down syndrome, twins and molar pregnancies but I read so much on here that some people just had high levels. I read one thread where two women had 10 MoM hCG and both were fine!!

I have everything crossed for you. Your normal Papp-a gives me hope xxxx

Hi @Babyy1

Wishing you peace during this horrible time waiting for a result - I've been there and waiting is just the worst.

You don't say what you might do if the baby is confirmed to have Down's Syndrome but I just wanted to say I'd be happy to talk (feel free to PM me) or point you towards resources about having a child with DS, if that is something you want to discuss.

I was where you are nearly 9 years ago, that awful wait for the NIPT result. Honestly for me once the result came in and it was confirmed that my baby had DS it was actually easier! She is 8 years old now and an absolute joy. No pressure, just letting you know I'm available if you want to talk.

Best wishes and I hope the wait passes quickly.

@AimeeLou84 thank you for your reply 💕 I keep going through so many emotions, one minute I’m okay and I rationalise it all in my head and the next minute I am frantically searching for answers. I have read today that taking progesterone can cause a higher hCG and NT result, which I’ve been taking throughout the full pregnancy. The positive stories on here definitely give me hope 🤍

@DownRightAmazing Thank you 💕 I think I am just in shock at the moment. With the previous losses we have had I always thought my risk would be a miscarriage, I didn’t even consider the fact our 12 week screening could come back as high risk.

I’m glad you found your happy ending and have the gift of your beautiful baby girl. For a few years I have followed a couple of accounts of Instagram who have children with DS and they are incredible. I do think it’s always important to educate so that people feel they have options.

I haven’t really thought much past getting our NIPT results at this point but thank you, it’s very kind of you and I will reach out if I feel I need to 🤍

I had a similar risk with my second pregnancy. The highest risk factor for me was very high HCG. Baby did not have Down Syndrome. Interestingly, although I was not classified high risk in my first pregnancy, I was called in about abnormal blood results, which again was higher than expected HCG levels. I did wonder if some people just produce more HCG.

@CSSL7 I received my results this morning and they have come back as low risk 💕

That's amazing news ❤️

This is amazing!!!!!! I obviously couldn’t say it as I would hate to disappoint but your results really didn’t worry me after everything I’ve looked up!!

the probabilities are so wild! So so buzzing for you. Xxxxx

How long did everyone's NITP results take, I am 33 and have been classified as high risk for down syndrome after my 12 week scan. My NT was 2.3, Beta HCG 4.5944 and Papp-a was 0.6594. I have been given a 1 in 27 risk and the wait for results has left me extremely anxious, my NIPT was sent off on Thursday.

@Ladylime21 mine were sent on Tuesday morning and back the following Monday afternoon so 4 working days. The wait is excruciating. I hope all works out for you x

Thank you, the wait is honestly the worst feeling. I am just glad that NIPT is now an option as I had a miscarriage at the start of April and really didn't want to risk having the CVS.

Mine were less than a week. I did it privately at 11 weeks through my hospital, as I knew I wanted one regardless. I had my results before my NT and bloods.

@Ladylime21 I think mine were done on the Monday afternoon and back the following Tuesday. Hope all works out okay for you 💕

Just wanted to say my results came back today which was quicker than expected. The test has come back with a lower chance for down syndrome.

Great news @Ladylime21, you must be so relieved

So pleased you got the results fast. Some people just seem to produce a lot of HCG