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Antenatal tests

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Original poster

12 week scan yesterday... devastated. Any advice welcome.

232 replies

WickedWitchOfTheWest83 · 21/04/2018 18:13

Hi,

So yesterday (Friday) morning my husband and I skipped off to the hospital for our 12 week scan, both very excited to see our very much wanted 2nd baby.

An hour later, after hearing the heartbeat and watching the sonographer struggle because the baby was moving around so much (which my husband and I were laughing at because we thought it was so cute!), we were ushered into a private waiting room and told our baby’s NT is measuring at 6.3mm and there seemed to be a bit of fluid around the head too. I was hysterical and my husband was barely holding it together.

They took my bloods and couriered them off to be processed as quickly as possible and booked me in to see the consultant for another scan and CVS on monday. So we are waiting all weekend unable to function at all!

The foetal medicine nurse/midwife who was in the room with us at the hospital, trying to reassure but also prepare us and explain everything to us as best she could, called yesterday afternoon with the results...

1:146 risk of Downs.
1:9 risk of Patau’s Syndrome.
1:9 risk of Edwards syndrome.
Hormones are very low too - 2 particular pregnancy hormones that I don’t remember the names of.

So all is still going ahead on Monday with the scan and CVS. The consultant isn’t actually working on the ward that day but she is going to be in the hospital and has promised to come to the ward just for me.

We are in pieces. I can’t believe this is happening to us! This sort of thing is the kind of thing you read about but never think it would happen to you. Not really. I’m 34, my husband is 38. That’s not really old, is it? My husband and I just keep taking it in turns to be the strong one and hold the other while we cry. It’s mostly me crying, but he is just as devastated. We have to get through the next few days of tests, results and decisions and I’m not sure how to do it.

I keep scanning the internet and these threads looking for good news - women who have had the same experience but had healthy babies. We wouldn’t continue with the pregnancy if we didn’t think the baby was going to have the best quality of life, but we are trying to not go down that road yet - we want it to all have been a mistake on the doctors part.

I’m not sure what I am asking, but please post whatever replies you think might help.

OP posts:
notapizzaeater · 23/04/2018 08:36

Thinking of you today x

Doraaaa · 23/04/2018 08:38

Thinking of you OP x

Cantchooseaname · 23/04/2018 08:44

Such a hard road to walk. There are strangers next to you. Hope you find some peace today.

ForTheLoveOfCrispyCreme · 23/04/2018 08:52

Thinking of you OP xx

SevenTillFour · 23/04/2018 09:07

Thinking of you today Flowers

SD1978 · 23/04/2018 09:12

Although probably too late- have you considered the harmony test? Non invasive and correct to a high percentage as to whether or not abnormalities are present. Saves having invasive testing done. Hope all is ok x

Trooperslane2 · 23/04/2018 09:20

Been there OP.

Biggest of big hugs.

Cantchooseaname what a beautiful post.

Such a hard road to walk. There are strangers next to you. Hope you find some peace today

Waggily · 23/04/2018 09:43

I went through this about this time last year. I think the waiting is the worst part. Once you know what you're dealing with, it'll be easier to know what to do next.

Good luck this morning, it feels weird but not awful. I'll be thinking of you both

WhyDoesItAlways · 23/04/2018 09:50

So sorry to hear this. I went through something similar. They couldn't get the nuchal measurement at my 12 week scan because the baby was moving too much but did do the blood test which showed high risk for downs, can't remember my risk score for the other syndromes.

I remember very clearly the wait we had. The midwife came to our house at 6pm on a Friday with the blood results and had us booked in with the consultant first thing on the Tuesday morning as it was a bank holiday.

The consultant was great and did a really thorough scan. I then opted to have the harmony test as it's less invasive and much safer than the amnio. Luckily everything came back low risk and I now have a healthy baby.

I have done a lot of reading about the blood tests the NHS do to give you your odds and unfortunately they are notoriously unreliable as you can see from the many stories on this thread. When I was going through this they were increasing the capacity in the UK to carry out harmony tests and I just hope in the future they replace the current NHS blood test with the harmony to save unnecessarily worrying people.

I really hope it works out for you. Got my fingers well and truly crossed.

OoohSmooch · 23/04/2018 10:11

Our little girl is now one and we went through similar back in October 2016. It was awful. The NT combined with the bloods gave us higher risk of T21 and Edwards & Patau's. The CVS came back clear and then so did the full karyotype. We had to have an extra heart scan at 20 weeks and that was fine too. Our little girl was born in April 2017 and she was perfect.

The experience made me lose confidence in the combined test and next time I'd go via the Harmoney route. We risked a miscarriage when we didn't have to. However I don't regret doing the CVS as our risk of a life limiting chromosome issue was higher than the miscarriage risk.

Doobydoo · 23/04/2018 10:30

Thinking of you and your dh today op.

Notonthestairs · 23/04/2018 10:38

Just wanted to say I was thinking of you this morning. The waiting is awfulThanks

GlitterRollerSkate · 23/04/2018 10:43

Thinking of you and hoping for good news x x x x x

HappyGowerGirl · 23/04/2018 10:48

I'm thinking of you today. I went through something similar a few years back. It was the worst time of my life, in many ways the uncertainty and the waiting is the worst. I'm so glad you have a lovely supportive husband. Be kind to yourself and hang in there. Good luck today. (My baby, who was given a very small chance of a healthy life, is fine and thriving now, by the the way!).

ChevalierTialys · 23/04/2018 10:53

Thinking of you today op Flowers

TheDisillusionedAnarchist · 23/04/2018 10:57

My daughter had Edwards. She was born when I was 34. It’s the peak age for Edwards pregnancies. No horrific deformities though. Most babies, kids and adults with T18 (and I’ve met a lot) are very cute. This in no way diminishes the reality that most are very medically complex and almost all have profound disabilities.

I also have fibromyalgia and I agree stress is not great and the stress of having DD has led to PTSD for me. Primarily due to the horrific discrimination kids with T18 face from the medical profession. It’s stressful living with the reality that medics think your baby should die and deny life prolonging treatment on prejudice alone.

I hope for you that your baby does not have T18 or t13, whatever choices you make in this situation it is hard and I wish nobody had to make such choices. Hoping that all comes back ok.

Mannix · 23/04/2018 12:22

Thinking of you today OP Flowers

ToesInWater · 23/04/2018 12:30

Just saw this, thinking of you today and wishing you all the best. I chose to have CVS when I had an unplanned pregnancy aged 39. My other kids were 9 and 5 at the time and I knew that whatever decision DH and I made we were thinking of the whole family not just what we could deal with as parents. I am hoping to read good news but whatever happens you are not alone xxx

pigpoglet · 23/04/2018 12:31

Good luck Op ,

WanderingTrolley1 · 23/04/2018 12:37

Devastating news, OP Flowers

nervousFTM · 23/04/2018 15:28

Thinking of you OP. it's an emotional day (I had cvs a week ago) but wishing you all the best for good results later this week. The waiting is bloody hard work but you'll get there. Keep reaching out when you need to xxx

buttonz · 23/04/2018 15:36

I miscarried a much wanted baby with trisomy 13. It was horrendous and I really feel for you.

Trisomy 18 babies don't usually have physical deformities but trisomy 13 babies often have cleft palates and cleft lips.

onemorecakeplease · 23/04/2018 16:46

Hope today went as well as it could have
Thinking of you all

goldangel · 23/04/2018 16:54

Good luck OP.

Original poster
WickedWitchOfTheWest83 · 23/04/2018 19:55

Thank you everyone.

We had the CVS along with another scan. During the scan, which was painful but bearable, the consultants (we had 2 senior consultants, doctor and 2 nurses in with us) both said that the measurements of the baby look fine and there are no obvious abnormalities, but the nuchal fold is so large (6.3) AND surrounds the whole baby that they are still concerned. Plus my risks came back so high and my pregnancy hormones (hcg and Papp-a) are so low that it doesn’t look good.

They listened to the heart and they said it sounds perfect.

Anyway, now is just a waiting game. Just can’t get out of my head how perfect our little baby looked, kicking it’s little legs around and waving it’s arms around like there was nothing wrong.

Smooch your experience gives me hope that perhaps we might get through this unscratched.

We’ll know on Wednesday by 5pm. I’ll try to update you. Hopefully with some good news.

X

OP posts: