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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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Original poster

Bad news at 20 weeks scan

45 replies

Stephw9lso · 14/12/2014 12:38

Hi, it's my first time posting on here, I am desperate for some info. I went for my 20 week scan on Friday and was told that my baby girl had fluid on the back of her neck, I was told to wait and the consultant would scan me, whilst I was waiting I got took in to what I can only describe as a bereavement room, where a midwife came in and said I know you have been told some devastating news today, which I was confused at as I hadn't been told anything, a couple of minutes later I got took into another scan room to be scanned off the consultant where I was then told my baby had fluid from ear to ear and also on her lungs and also around her heart I was told that her heart wasn't the correct shape as it was round and the consultant would have expected it to be longer and also that the walls looked thicker than she would expect. I was giving a appointment for Monday (tomorrow) with a top foetus heart consultant for a echo scan and then another appointment on Tuesday for a amniocentesis. It has been the longest 2 days of my life and I am finding it very hard to see any light at the end of the tunnel. If anyone has any info or has been through a similar thing please reply. Thanks

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ChatEnOeuf · 14/12/2014 13:00

Oh how horrible for you

I've never been through this but a friend did so I know a little bit. Sadly her baby's heart was failing and she passed away a couple of weeks later. I truly hope this isn't the case for you and that it is a simpler problem with a better outcome.

Poor form from the MW not knowing what you had been told before talking to you too.

I know it will be a horrible wait until tomorrow but I'll hold your hand until then

Original poster

Stephw9lso · 14/12/2014 13:12

Thanks for your reply. Such sad new about your friend xx

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Jodie1982 · 14/12/2014 13:28

Oh that's awfully sad/scary news for you Hun, I can't begin to imagine how your feeling.
I've no experience, but I just wanted you to know that I shall be praying for a better outcome for you n baby tomorrow. X

Tranquilitybaby · 14/12/2014 13:40

Hand holding, I hope you get some answers very soon xx

BitchPeas · 14/12/2014 13:43

I went through similar a few years ago but for a brain abnormality. Unfortunately the baby would not have lived outside the womb so I decided to terminate.

It was the worst time in my life but it does get better.

This point, where you don't know for sure, is the worst IMO.

Practically, write down any questions know as it can be very overwhelming when you are seeing the specialist.

In case of further bad news/diagnosis, Is there a close family member or friend that could go with you for support as well as your DP/DH? I found my DMother being there really helpful as she was clear headed to get the practical information while we were devastated and not really concentrating.

I'm so sorry you are going through this. Fx for your appointments this coming week.

Original poster

Stephw9lso · 14/12/2014 13:54

Thanks for your Reply. I have Written down questions but my head is all over the place and I am finding it hard to even function. I had a missed miscarriage in June and that was hard enough. I also have a 4 year old daughter which I dread having to explain things to if the worst happens. Thanks again for your reply xx

OP posts:

SunbathingCat · 14/12/2014 13:59

This reply has been deleted

Message withdrawn at poster's request.

Original poster

Stephw9lso · 14/12/2014 14:06

Thanks xx

OP posts:

KeepSmiling83 · 14/12/2014 14:08

I am so sorry. It is the waiting and not knowing that is so hard. As someone said I would write down any questions you want to ask as everything will go out of your head when you are with the consultant.

The other thing is not to google. We had something come up at our 20 week scan and I googled. All the worse case scenarios come up which don't help with anything. So as hard as it is try to wait until your appointment tomorrow rather than looking for things on the Internet.

I hope you get some good news tomorrow x

naty1 · 14/12/2014 16:23

Just wondering, probably not relevant, but did you have the NT scan at 12 weeks or a dating scan only?
As i was under the impression heart issues were correlated with higher than usual NT measurement something to do with fluid draining.

I really hope scan tomorrow is good news, fingers crossed. It sounds like they are moving things as quickly as possible which is good as it will minimise this worrying time.

Original poster

Stephw9lso · 14/12/2014 16:38

I paid for a private scan at 8weeks then had the normal 12 week scan with the nhs I paid for a second scan at 17 weeks to find out the sex of baby and nothing at all was picked up at any of these scan which I am wondering why?? It was only at 20 week scan on Friday that problems were mentioned x

OP posts:

Izzy24 · 14/12/2014 16:46

The 12 week scan will sometimes pick up some markers of problems. But sometimes things aren't evident until the twenty week scan.

Unfortunately private scans can vary in quality and are not always reliable.

I'm so sorry you are having this dreadful waiting period. As others have said, the not knowing is so very hard.

I'm glad you have someone to go with you tomorrow.

ChatEnOeuf · 14/12/2014 16:49

It's really hard to know without knowing the diagnosis, but with my friend, the heart had changed shape because there was a severe blockage in one of the valves. This led to progressive heart failure and then the accumulation of fluid. It just wasn't visible on her 16w scan because the heart was really tiny (it's hard to see the valves anyway) and the problem is progressive - so the fluid just wasn't there as the heart wasn't as damaged at that stage.

naty1 · 14/12/2014 16:55

So you got a letter with the measurement of the back of the neck (downs screening)? as not sure all hospitals do that at the same time or offer it.
I guess thats why 20w scan is so much later as more will be visible on larger baby. And nhs have presumably a checklist.

Are they looking to rule out a genetic issue with an amnio?

Original poster

Stephw9lso · 14/12/2014 17:33

No not for the 12 week scan I didn't her NT at 20 weeks is 7.9mm which I now know is high. I have a appointment for the amino on Tuesday to rule out any genetic issues.

OP posts:

naty1 · 14/12/2014 18:15

That does sound high but then baby would be larger than at 12w. When most of the other measurements online at taken
I didnt realise they could/did still measure it at 20w.

I would think if it was obviously very high at 12w it would have been spotted even without a direct measurement of it. (I hope anyway as they are measuring this all day long)

thoughtsbecomethings · 14/12/2014 18:22

13 years ago nearly to the day I received very similar news on my scan, and had further tests, unfortunately our little girl wouldn't have survived so we choose to terminate the pregnancy 7 days before Christmas Day.
I have never been through so heartbreaking in all my life and it has stayed with me.
I wish all the strength in the world as he range of emotions are at times unbearable

thoughtsbecomethings · 14/12/2014 18:26

As OP have said ask questions, however silly they may sound and try to take time to make any decisions. I at times felt rushed in making decisions and i hope that in the 13 years that have passes there is some form of aftercare for you all, as there was none available at my time

Poppiesway · 14/12/2014 18:29

The area of fluid that is measured at the Combined Screening is not present at the anomaly scan, it has gone after 15 weeks which is the NT is not done after this time. It is likely to be the cisterna magnum which was measured and increased, along with fluid around the chest.

The private sexing scan is not a medical scan, (although they should be carried out by qualified and upto date sonographers - sadly they not always are) they should have got you to sign a disclaimer that you had not had your anomaly scan and are not liable for any medical issues they do not see. Things change very quickly over the space of days in babies.

I know of a heart defect that was picked up at a recent anomaly scan, the fetal medicine consultants agreed with the sonographer, baby was sent to great ormond street and the problem had resolved.
I also know of a fetal med consultant who performed a private anomaly scan and missed a very large hole in heart. It was picked up by routine growth scan during nhs scan. Unfortunately things develop or are missed by the best of sonographer and Dr.

I am sorry to hear your bad news Steph. It is a very hard time and I hope the amio results are what you want to hear

Tollygunge · 14/12/2014 18:35

I've been here twice, and I wanted to offer some words of comfort. It was (and remains) the saddest experience of my life, but somehow, if the worst comes to it- you do move on. ARC are the most amazing people- not sure if anyone else has recommended them? I still ring them now if I have a 'wobble' if you live in/near London it might be worth getting transferred to uch- the doctors there are absolutely amazing, or paying to go private for a scan at the fetal medicine centre on harley street. If you need a friend in this, please do pm me x

naty1 · 14/12/2014 18:37

I thought it was gone too but saw on (probably) a US site them discussing it in relation to 20w scan.

Tollygunge · 14/12/2014 18:39

Antenatal results and choices. The helpline literally saved my life at a v low point. Whatever you do, try not to feel guilty. You're acting in love and in compassion. Xxx

Itsfab · 14/12/2014 18:39

I hope things aren't as bleak as things seem now.

We received bad news at our 20 week scan. We refused amnios. I had my baby and it turned out the doctors were all wrong and he is relatively fine. Physically he has had some difficulties, and emotionally too but he is here and doing well.

Take care.

Original poster

Stephw9lso · 14/12/2014 18:40

Thank you to everyone for your replies. I am hoping and praying that next week brings better news I will update tomorrow. Thanks again xxx

OP posts:

ChippingInLovesChristmasLights · 14/12/2014 18:50

Steph, I'm sorry you are going through this, it's even worse when there's a weekend and you have to wait longer. I'll be thinking of you tomorrow x

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