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AIBU to ask those whose baby was diagnosed with Down syndrome antenataly what your blood results were?

(31 Posts)
Sparklesdontshine Mon 05-Feb-18 20:14:07

Sorry I put this in AIBU, but I haven’t had any replies on the antenatal test board blush, and am posting for traffic.

I’m currently waiting for my Iona test results, but according to the NHS tests I have a 1 in 6 chance.

I am not good with not knowing things, so have been obsessively researching it, and wondered if anyone would be Kind enough to share their tests?

My NT 3.4
HCGb 1.44 mom
PAPP-A 0.69 mom
I’m 39

MatildaTheCat Mon 05-Feb-18 20:18:03

Please don’t do this to yourself. The results also take into account the exact gestation of the pregnancy so it’s just not possible to compare. I’m sure you are capable of turning the 1:6 to a percentage or another way of presenting the data which can make it a tiny bit less scary.

I wish you well and hope you don’t have to wait too long. Have they also looked at your baby’s nasal bone and heart?

Best wishes.

Turquoisetamborine Mon 05-Feb-18 20:33:07

I think my result was something like 1 in 13 when I was 35. I refused an amniocentesis because I was taking no risks with my baby and had the NIFTY test. DS is perfect with no disabilities. Apparently ivf makes the results higher chance.

helterskelter99 Mon 05-Feb-18 20:37:55

Mine was obvious from the scan so we were never given figures However we were referred to a specialist hospital & seen within 24 hrs as it was that bad. There were a lot of complications

The only other people deemed to be equally high risk for something else were also seen within 24 hrs

I would therefore take a deep breath and think that there is a 5 in 6 chance of everything being ok. Fingers crossed xx

Bingbangboo Mon 05-Feb-18 20:39:12

I completely understand the obsessive looking for comparisons, there is absolutely nothing else you can focus on until you know your results. Other people's results won't bring you comfort though as they have no impact either way on whether your baby is affected or not.

My result was 1 in 47 and she did have downs.

ElsaMars Mon 05-Feb-18 21:08:49

I was given a 1 in 15 chance in July and had the IONA. I remember the agony of the wait very well so you have my sympathy.
I'm the end my result came back 1 in a million, hoping yours in the same flowers

MaunderHunt Mon 05-Feb-18 21:17:03

My hcg was 3.0 and papp a was 0.6. NT 4.6mm.1 in 3 for DS, amnio came back clear for DS. Age 32.

Sparklesdontshine Mon 05-Feb-18 21:43:48

I know everyone’s is different, but I just can’t figure out how they have reached the result that they have, because my bloods seem ok!

The baby is very much wanted, regardless of diagnosis, I’m just finding the not knowing so hard sad

Rebeccaslicker Mon 05-Feb-18 21:46:46

Oh OP, it's so hard waiting for results. My friend had 1 in 3 so had amnio and it was the hardest week of her life (baby did not have DS).

🤞🏻and flowers for you.

silver1977 Mon 05-Feb-18 21:51:26

I feel for you. The waiting is awful. We were given 1 in 3 odds of having Downs and had to wait 6 weeks before she was born and we could see/was told she didn't have it.

Vichette Tue 06-Feb-18 09:05:50

I have a friend whose chance was 1 in 5 and he was born without I also know somebody who had completely normal results but had twin downs boys. The NHS test is not that accurate. Can you afford to privately have the NIPT blood test this is much more accurate and non invasive we paid for this privately and it was very reassuring in our case and will at least give you some certainty one way or another

YellowFlower201 Tue 06-Feb-18 09:18:53

I'm sorry OP. The wait is horrific and it's totally heartbreaking. Please don't torture yourself googling things and stressing yourself out. It will not give you conclusive answers.
Just as a sideline as a PP mentioned it nasal bone length...the average measurements do not take into account that some ethnicities have shorter nasal bones (e.g. Chinese and African). We were worried sick about the nasal bone being clinically 'absent'. Baby doesn't have Downs.
All the very best OP. You will smash this whatever happens.

Sparklesdontshine Tue 06-Feb-18 16:09:46

Thank you. They didn't mention the nasal bone so I'm not sure if that was checked? Can you check.by looking on the scan?

Should get results from nipt back any time from tomorow.

Deshasafraisy Tue 06-Feb-18 16:14:35

1 in 5
Refused amnio
No downs

Doremisofarsogood Tue 06-Feb-18 16:14:50

We were given 1 in 5 so had amnio, (I was 35), figures went from 1 in 200 to 1 in 80 to 1 in 5. Waiting for the results was the hardest time of my life ever but she was born without downs and no issues. There are so many inaccurate results, the tests are obviously not the best and cause so much unneccessary worry. The NIPT test should replace the current one - less invasive and more accurate. Try not to second guess everything and see what tomorrow brings. Thinking of you x

katieash76 Tue 06-Feb-18 16:28:08

We had a result of 1 in 2 and a NT of over 9mm, which is extremely high. We saw a specialist as soon as possible and had amino which was positive for Downs and a wealth of other complications were discovered. I was 36.
The waiting is truly awful, as hard as it is try not to dwell on it as it won’t change anything. I hope you get a good result.

dontputmedown Tue 06-Feb-18 21:40:31

How lovely and refreshing to read that your baby is very much wanted regardless of diagnosis. My son was a post natal diagnosis so unable to offer any stats, also was 13 years ago so no recollection at all!
However, thought you may like to take a peek at this website which is written by parents for parents, like yourself going through screening/ have a high chance of baby having DS to show the reality of life with Down syndrome in the 21st century. Several stories are from mums whose little one was an ante natal diagnosis. www.positiveaboutdownsyndrome.co.uk

Calvinlookingforhobbs Tue 06-Feb-18 21:43:25

Twelve years ago my sister was told her baby would be born with spinal deformities and she should consider s termination. The odds were given at 80% or thereabouts. Her son was born healthy. Completely healthy.

getondown Tue 06-Feb-18 22:11:24

Hello and congratulations! We didn't have the non invasive test or amniocentesis and our initial screen came back as a 1:100 chance of Down's and my darling son was born 6 weeks early with Down's syndrome. It is good to prepare but try not to worry too much or get hung up about test results, easy to say I know! What I can say is that my son is an absolute joy, he is a fantastic brother and an asset to our family, I wouldn't change the journey we are on. I would also urge you to check out www.positveaboutdownsyndrome.com as well. I found that medical people had a very negative outlook and out of date ideas about what life is with Down's syndrome is like today. I went to my son's parents evening today and I couldn't be prouder. Please feel free to get in touch if you want to chat. Take care xxx

YellowFlower201 Tue 06-Feb-18 22:18:14

I'm sure they would have checked the nasal bone Sparkles. It's a standard measurement they take. They probably didn't say anything because it was fine.
I'm wishing you all the very best!

UnderTheF1oorboards Tue 06-Feb-18 22:22:48

I haven't been in your shoes because our diagnosis was postnatal (1 in 1586 at 12 weeks, ha!) but just wanted to reassure you that your baby will be a belting little person; Down Syndrome or not. It so, so, so doesn't matter.

pinkpip100 Tue 06-Feb-18 22:47:54

Congratulations on your pregnancy OP. I'm sorry to hear you're in this situation as the waiting must be so hard. I can't help with results as I didn't have any of the screening tests but my dd (now 4.5) was diagnosed post-natally with downs. She has been such a positive force in our family already, is doing really well in mainstream reception, has loads of friends and loves life! The reality is nowhere near as scary as the prospect. If your results are positive I would definitely recommend the PADS website linked in other posts above (and even if you get a negative result it's worth checking out anyway). Best wishes for the rest of your pregnancy 😊

Lovelily2016 Tue 06-Feb-18 23:24:40

I had a 1 in 99 chance so had the serenity testing. The 4 days seemed to drag and I just tried to keep busy. We received our results that our baby had down syndrome and was a baby girl. Lily is now 2 years old and is just amazingly perfect. (All apart from the terrible 2 tantrums hahah) as others have mentioned the positive about down syndrome site is fantastic. A real view of life with down syndrome. I hope you get your results back soon and please try not to worry too much. I know it's far easier said than done. Xxx

CurlyBlueberry Tue 06-Feb-18 23:28:59

As you are 39 this immediately pushes up the chance they give you massively. Because they combine the bloods and scan result with your age to come up with the final estimate, knowing the figures other people got won't be of much use to you. There's a chart here if you are interested: www.wolfson.qmul.ac.uk/service-1/antenatal-screening/screening-tests/calculating-the-risk-of-down-s-syndrome

Congratulations on your pregnancy, wishing you all the best x

Sparklesdontshine Wed 07-Feb-18 06:26:32

Thank you everyone, the PADS website is really helpful I have read all of the stories on there and it is very reassuring.

Today is day 3 of the 3 to 5 working days for results, so I'm hoping I find out today.

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