12 week scan results bad news

[msanne]

Hi Ladies,

It has been a horrible few days; we went as normal to our scan but the sonograpgher gave us a bombshell in that coupled with my blood readings (Hcg and PAPP-A are around 1.18 when they should be at least 2) and the babies fluid measurement behind neck (measuring at 6.4 when it should be no higher than 3) that there is huge chance that our baby is serverely disabled/sick either due to one of the trisomys or heart defects.

We are shattered; I've had 2 healthy pregnancies before without any issues and was completely blindsided by the diagnosis.

Since then I have had a CVS done and am now nervously awaiting the results; my question is, has anyone else been through something similar? How did it turn out for you? I just can't believe that there is something wrong with the baby, but the screening says otherwise.

Any advice would be appreciated in this nerve-wracking time.

Thank you xx

So sorry msanne no experience or words of wisdom to share but didn't want to read and run .

I'm so sorry OP
Similarly we have been told at 20weeks that baby has a lethal form of skeletal dysplasia. His limbs and chest aren't growing to the rate they should. So we have had 9weeks of heart ache. We decided to continue with pregnancy, but high chance baby won't survive. So the feelings your feeling atm I can completely empathise with! The waiting was so so hard and left us both in shock. Every time I received a phone call my body would start shaking Uncontrollably.

At our 12wk scan baby wasn't in the right position so she couldn't measure the nuchal measurement! So we may have known earlier that something was wrong. I had an amnio done and the trisomys came back all clear. So it's most likely skeletal dysplasia for our little man.

I really hope you get more answers ASAP!!

We were referred to the charity ARC. We called a few times and they were very helpful. They also mention other hospitals to consider being referred to etc.. they mentioned a London fetal med hosp (which are supposed to be top class) so we ended up getting referred there. So they may be able to give you some advice on the matter. Or simply just be there for a chat and to hear your worries.

Sorry again op. Hope you get more clarity soon

I am so sorry for you too MisssC3025 - is this your first baby? It is just an absolute fealing of hopelessness, and I am sorry that you are having to go through this at such a late stage of pregnancy. A sonograpgher gave us our initial results and then just discharged me home to wait for a call on Monday. I totally flipped out amidst tears and anger and got my consultant appointment and CVS done yesterday. The latter appointment was much more informative and thorough - even though the news appears the same....NM is high, hormone levels low. But heart is beating normally and limbs etc look normal - so holding on to whatever hope I can for now.

You are very brave and strong - as you need to be for your little baby. I sincerely hope, that upon birth things start to work themselves out. I keep getting told that you cannot know the severity of the issue until the baby is born as there is only so much US can see.

I will be on tenterhooks from tomorrow as they can call at any time.
I will definitely give ARC a call. Also, do you know the name of the London Fetal med hospital please? I want to get referred there asap as our local Trust is hopeless I'm afraid to say and I do not trust them for care and support going forwards.

Sending you lots of hugs and love and thank you for your kind words xx

Hi. Yes it's our 1st 💔 we have so much love to give it hurts so much to know we may not be able to do that. I just want to keep him safe inside my tummy forever! Plus this Coronavirus is another awful thing. I am one nervous anxious mess!

I'm glad the other appt was more informative but I guess that's all you can do atm is hold on to hope until you have more clarity to get your head around it all. Bless you!!

That's what we've been told. They can't diagnose the actual type of SD but they believe it to be lethal because of his chest size (too small so lungs can't develop 💔💔) but they won't know until baby is born what is it exactly! So nervous he's due in June!

Of course I can we were referred to Harris's Birthright Centre at Kings College London's fetal med unit. We had a few scans there. They do have trainee sonogrophers there but because of the severity of your appt they then sent senior sonogrophers in to check too. We're no longer with this hosp as a bit too far from us.

I am going to deliver my baby at my local, but they know what's happening and what interventions to put into place. I'm having more scans soon as it's been over 9weeks since the last one, so we're hoping to see some changes in measurements. I shan't hold my breath though!

Definitely call ARC I really hope they can help with your emotions and concerns.

Sending you lots of love too! Xx

Thank you for telling me the name of the hospital xx

I will be praying for your LO too - please stay strong and try to be kind. If you need to talk - please ping me xx

Same to you lovely PM me anytime. Keep me posted won't you?

🙏🙏🙏

Defos xx

you should get a result fairly soon I would expect. It only took a couple of days following my CVS, i have had good and bad news following them ....really hope its good news for you

Hi, so sorry to hear this but know you are not alone. We had our 12 week scan yesterday and were shattered to find that at 13+1 the baby has a 11.2mm NF and we are having some more tests tomorrow. We don’t know anything else just that the hospital staff didn’t seem positive.
I’ll be thinking of you and keeping positive xxx

Jus not seen any threads of such a high NF
❤️❤️❤️❤️

Thank you Champagneandfromage50 and Peds2.

I am waiting today by the phone as the Midwife said it could be today or tomorrow.

I had a CVS done and although slightly uncomfortable/painful you will get through it.

Google has been my friend and enemy ...don't know if it's a good thing at all sometimes. But from what I understand the NF is important but the presence of fluid around the chest and head is more significant and a bigger indicator if anything.

We all need some positivity - sending you lots of good vibes and hugs!

xoxoxo

msanne i truly hope you hear good news

Hi @msanne,
How are you doing? Did you hear today?
I thought I would share my story which will give you hope.
Back in 2015 we went along to our 12 week scan without any worry etc. I had a healthy pregnancy 3 years earlier so had no cause for concern. Anyway, our baby had a nuchal measurement of 3.8 (so not too high) but coupled with my bloods the baby had a 1in 5 chance of Down syndrome/ chromosomal abnormality. We immediately went to have the CVS but they couldn’t perform it because the placenta was in the wrong position? Anyway, I eventually had the amino at 17 weeks. It was just before Christmas so everything was slow. All the results came back normal, as did a detailed heart scan and numerous scans. My baby boy was born healthy (although I did give him Group Strep B in labour - that’s a whole other story!). He’s now nearly 4 and fine! Nothing was ever found to be wrong with him. I must admit, he has always been a little bit slower developmentally but you wouldn’t pick him out of a crowd. So I hope that gives you hope The combined screening of the nuchal Measurement and bloods is not always accurate and a lot of the time women go on to have healthy babies. If the only ‘marker’ on the scan was the nuchal measurement then to me that’s a good sign.
Take care and let us know how it all goes x x x

You ladies are amazing. Thank you for your encouraging words.
Unfortunately, the Hospital rang me late yesterday afternoon, our baby has markers for Edwards syndrome.

We are off to the hospital this morning to discuss "options" - I really feel numb from it all. We had so many dreams for this little person and now they've been ripped away from us. I just want this little soul to not suffer any more.

Hope others have better news xoxo

@msanne I'm so sorry to hear this. I hope the appointment at the hospital is as helpful as it can be for you both to make he right decision for you both. Thinking of you

Hope you're okay @msanne x x

Hi OP,

If you feel able to please so share how you got on today!

We are all thinking of you xx💕

Yes thinking of you x x x

Thinking of you xxxx ❤️

We are waiting our results tofay from the tests xx

@Peds2 I pray for you too and here to read how you're feeling after results

Thank you ❤️❤️❤️

Hi Ladies,

Sorry for the lack of responding - it has been a horrible 1.5 weeks.

The deed is over and we were at least able to bring her back home. We buried her in a planter underneath a cherry blossom tree. This tree has blossomed since last week which brings some peace to us.

The whole experience of delivery itself was terrible - due to Covid there was little to no support from the midwives and also little to no pain relief. Defintley the worst experience of our lives but in a messed up way has brought us closer.

We were able to give her a blessing too.

I really wish you all the strength to get through the pain - it is unbearable but our bodies and minds are amazing.

Sending you all lots of love and peace xx

Didn’t want to read and run. I’m so sorry @msanne. Difficult to know what to say. The burial place for your baby girl sounds beautiful. I’m just sorry it wasn’t better news.

Sending so much love to you @msanne x x x
I’m so glad you got to bring her home with you, she will always be with you. You’ve been through a lot and I have nothing other than admiration for you x x x

Sorry for your loss. The burial by the cherry blossom tree sounds like a special place for her to rest