Feels like a living nightmare - scary news at 20 week scan after 3 previous "perfect" scans

[3rdtimemomma]

Hi everyone

Just looking for a place to vent and more so if anyone has any advice or has been through the same thing.

So this is my First baby with my partner but my 3rd baby, I am 31 years old.

Background: spotting at 6 weeks referred to EPU and all was fine. Baby was there and a little heartbeat but there was an area of bleed which wasn't near baby and I had with a previous pregnancy and it usually clears up on its own.

Private scan at 8 weeks and 3 days - all appearing fine - heartbeat seen, baby growing perfect to dates and the bleed was not seen on this scan.

Due to my partner not being able to come to my 12 week Nhs scan we had a 12 week scan at 12 weeks private - all appearing normal, low NT , baby looking fine and again perfect for dates.

My nhs "12 week scan" was at 13 weeks and 1 day , again absolutely nothing noted, my nt was 2.3 and results came back in the low risk.
At this point had no reason to be concerned.

We went for a private scan at 16 weeks and 3 days, again all appearing perfect and normal. And we found out we were having a little girl.

Fast forward to yesterday I had my anomaly scan (19 +6) and I feel like my whole world has fallen apart.

I was alone due to my partner not being allowed due to covid so I think i was on a downer anyway and dreading any sort of news.

So everything was completely fine and normal and all done in great detail as expected at 20 weeks scans. All bar 2 things.

1 - there was a brightness to the baby's bowel which I know can mean a number of things

2- baby's head had a "lemon sign" although this is slight as Iv looked at "lemon sign" skulls and they seem extremely mis shapen.

The sonographer was lovely and just said he has to do it just incase, they have seen a lot worse and it is probably nothing but it's his job to note anything that looks slightly out the norm. Of course I appreciate everything he says.

So straight away I was in pieces and we have now been referred to fetal medicine and have the scan on Tuesday as they work fairly quickly.

I am absolutely petrified!!! My head is all over the place and so many things are going through my head. I just want our little girl to be ok. Trying to stay "normal" and hold myself together for my other 2 children at home but inside I am absolutely in pieces and the days are feeling super slow waiting for Tuesday to come.

Does anyone have any advice or positive stories about any of the above I'd really appreciate hearing anything or even the not so positive, I'm trying to be realistic about the situation.

Thankyou xx

Sorry I don’t have any advice but just want to send a virtual handhold. Hopefully everything will be fine

Hope all goes ok for you. My fetal medicine specialist told me a bright bowel can be a result of early bleeds. So that could explain that. I've not heard of the other issue. Sounds like you're in good hands x

@Livingmagicallyagain
Hi!
Yes the other things were swallowing of blood and also infection.
The worst case outcome is Down's syndrome, I don't believe she has it, there have been zero other indicators which I'm hoping is a positive sign.

The lemon sign with the head at worst again is like to spina bifida, I mean her head isn't dramatic is so slight so again I'm trying to think positive and her spine was checked and all was normal. Brain etc was normal and the cerebellum again completely normal, so I'm really holding onto these little positives.

I think the waiting is the worst part and the not knowing

The bowel can be due to early bleeds. It can also be due to cystic fibrosis. You and your partner can easily be tested to see if carriers though and 97% of cases are not cf.
There's also a rare chance of cmv. Only 10% of adults are negative and only if you become infected during pregnancy I believe that this can be an issue (I used a fertility clinic and this was a big issue for them so I was tested).

I also used fetal medicine and they were amazing. Went from being told there were issues on the Sunday to totally reassured on the Tuesday with some extra test results 10 days later.

Hopefully you get the same.

@MotherExtraordinaire
Do that refer to the herpes??

Because I read about this and I have got it in my body but not the genital type it's the other type, my partner always struggles with cold sores!! And sorry for tmi but passed it onto me down below and I was petrified of it affecting pregnancy.

@MotherExtraordinaire thanks for your reply, it's really reassuring!

I just want Tuesday to hurry so a little bit more light can be shed!

[quote 3rdtimemomma]@MotherExtraordinaire
Do that refer to the herpes??

Because I read about this and I have got it in my body but not the genital type it's the other type, my partner always struggles with cold sores!! And sorry for tmi but passed it onto me down below and I was petrified of it affecting pregnancy. [/quote]
Cmv is in that family, but it's more complex than do I get cold sores or genital warts as its neither.

www.nhs.uk/conditions/cytomegalovirus-cmv/

They have info. Its very unusual for this to be a problem. But the clinic I went to had seen problems so were very definite about partners who were cmv negative having to only get cmv negative gametes.

I had abnormalities picked up at my 20 week scan. The fetal medicine consultant looked after us really well. I now have a 7 year old who has multiple disabilities and health issues but who is completely perfect and is loved by everyone who meets him.

Good luck on tuesday. I was referred to fmu at 12 weeks and saw them once or sometimes twice a week from 15-36 weeks. There were lots of indications that there would be a serious problem, but actually everything was fine.

Just want to wish you good luck

@elliejjtiny what did they pick up if you don't mind me asking??

@Smallbus1 thanks for your reply... what did they pick up on initially for you x

@Cleverpolly3 Thankyou!! It can't come quick enough

I was referred to fetal medicine where one of my twins was diagnosed with a bowel condition and potential Down Syndrome. They were amazing. Explained everything really well and clearly, gave me all my options in a really sensitive way and respected our decisions. I rang them a couple of days later with further questions and they were great and answered everything. The not knowing for me was far worse than what they told me! Knowing what we were dealing with and having a plan helped a lot. My DD does have Down Syndrome and she is the best thing that ever happened to us. I know you were looking for reassurance your baby will be fine and I really hope that is case for you but just to let you know the alternative outcome is ok too xx

@DSsnmum
Thankyou for your reply!

Did you have any other indicators before this was picked up ?

I think I'm struggling with it because it's a shock with zero indicators before now, I'm still trying to get my head around it and it's the not knowing and the what ifs and the decisions we will have to make 😢

@3rdtimemomma high NT at 12 weeks and then severe polyhydramnios from 16 weeks (which can indicate downs, heart issues or other genetic problems).
I realise my first post sounded a bit boasty. It wasn’t meant to at all, sorry.

No none at all! We didn’t have the screening at 12 weeks though as if we then went onto have an amnio they would have had to do it in both twins making the risk of miscarriage very high. It was a really big shock. The local hospital picked up an extra ‘bubble’ of fluid in her bowel at 28 weeks and referred us to fetal medicine to have that checked and that was the first time anything had been seen. The what ifs are the worst, I definitely felt calmer once I had a plan in place and had all the information I needed to make an informed decision. You could also be worrying about nothing!!

@Smallbus1 oh no it didn't at all don't worry!

Really appreciate the reply and I like to hear everyone's experiences of anything related.

It's just nice to vent/ discuss / share stories x

3 weeks ago i had my 20 wk scan and they found excessive fluid around baby's heart. Midwife said it was a minor amount but because they had seen and just over threshhold she had to refer us to fmu. She also said she wasnt worried at all, of course i was so worried for the next week and a half. The consultant confirmed everything was ok. Midwife did say the scans are picking up allsort but they have to investigate further.

Hey OP, when I was pregnant with DC last year I had a scan which showed ventriculomegaly. I was a mess - tried not to worry but there was such a wide range of possible outcomes that it was really difficult not to be aware of what might be. Referred to the nearby Women's Hospital, multiple ultrasounds plus MRI, lots and lots of waiting…and then it resolved. Just like that!

Obviously my experience is different from yours, but I wanted to reassure you that anomalies detected on scans don’t always lead to anything sinister. Also, I 100% get how stressed you must be about this, and that’s ok. Look after yourself and I am sending prayers/positive thoughts that you will also have a healthy and sound baby.

No stories but sending lots of hugs x

@3rdtimemomma they picked up a cleft lip initially, then later polyhydramnios. Straight after he was born the Drs noticed his head was big and he had an Mri scan which showed he had ventriculomegaly, a slim corpus collosum and his brain looked immature for his gestation. He was diagnosed with low muscle tone at a few days old and global development delay aged about 1 I think.

@elliejjtiny Thankyou so much for sharing.

In your case it sounds like he's brought so much to your life.
I don't want to sound and be negative, I worry about so much, I'm probably thinking too far ahead, I want her to have a good quality of life, I worry of the impact on my other children and my partners ( we already have 4 between us).

So many things running through my head.

We are lucky to both be in a job where we are around at home constantly and always one of us is at home.

I think because it's 2 seperate things it's like 2 seperate conditions to think about or 2 issues should I say as the conditions are "worst case scenario" health wise.

I know I need to stop thinking and googling and just wait and see for Tuesday.

It's the worst time with Xmas and all my partners family coming round for dinner and we haven't told them anything and won't be until we know for sure.

I for now need to suck it up and just get on with things x

Hi OP, I had a very similar experience earlier this year (the week of the first lockdown). Had my anomaly scan at 18 weeks where they found a brightness on her lung and I was told there was a high chance of Down syndrome. I, like you, had to wait until the following week for a referral to the fetal medicine department at another hospital.

They were fantastic though and really helped to put our minds at ease. They were able to identify the problem, allowed us to have discussions with the surgeons for post natal care and arranged for delivery with them where she would be cared for in the NICU.

Try not to worry too much and I hope it all goes well for you and your little one