Please help - trying to prepare - Fertility Network UK

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Please help - trying to prepare

lizzybee81 profile image
26 Replies

Hi just a quick recap on us. 7 week saw 2 heartbeats but at 9+6 reassurance scan found that we lost one foetus at 9. On Wednesday we have our official 12 week NHS scan & I’m trying to mentally prepare for the different outcomes and wanted to ask for advice.

1.- As we’ve lost a foetus will my blood test be accurate or would I need an amino?

1.2.- What are the chances of miscarriage with amino at around 12 weeks?

1.3.- How accurate would just a neck measurement be for any potential abnormalities?

2.- Should the worst happen and we’ve lost this pregnancy altogether what would the timelines be for surgical management esp with Covid? I’m deathly afraid that it would happen naturally while I’m waiting for this and I know I won’t be able to cope with a double miscarriage at home.

Please understand that my coping mechanism is having an understanding & plan for all eventualities. It’s not a negativity or positivity thing, it’s about being prepared especially in this situation where I can’t control anything I at least want to understand what we’ll be facing. I’d really be grateful for your experiences, the thing I’m the most afraid of is the unknown and the next 6 months are an entire blank at the moment. Thank you.

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26 Replies
AllWeNeedIsluv profile image
AllWeNeedIsluv

Hi lizzybee. Im sorry i can't answer all your questions im also sorry for your loss. As far as im aware the neck measurement and the bloods is a percentage and they give you high risk or low risk answers if that's how they still do it. Lots of the time bubu isn't in right position and you'll either be asked to walk jump a bit and they'll try again or they will leave it and say you could get a test done at 16 weeks think if you wanted.

My way of coping is always preparing for the worst and when the outcome is different its a bonus and a relief, each milestone is a step closer and a reason to smile and celebrate. Keep looking forward prepare yourself best you can and ask any questions you need to to the drs midwifes sonographers, i hope someone else can answer you better than i. Lastly i wish you so much luck baby dust and positivity for Wednesday. 😘 💗

lizzybee81 profile image
lizzybee81 in reply to AllWeNeedIsluv

Thank you so much, it’s exactly why I posted, I wanted to prepare for the worst whilst hoping for the best

Celloheggy profile image
Celloheggy

Oh Lizzie, I’m so sorry it’s all so stressful, but fingers crossed for some good news.

I can answer number 2. Today should have been my dating scan but sadly my baby died at 9+3 and I had a D&C 2 weeks ago. My body totally didn’t realise, and I’ve got a toddler at home so decided surgical was the way forward. From my scan at the EPU I had to wait 7 Days and have a Covid test 3 days before. Not as quick as I wanted but I suppose it could have been longer. Also be prepared that your husband will not allowed into the EPU for anything.

Really hoping you don’t have to go through this. Good luck xx

Italy300618 profile image
Italy300618 in reply to Celloheggy

So sorry for your loss xx

lizzybee81 profile image
lizzybee81 in reply to Celloheggy

Thank you, that helps so much. I'm so very sorry for your loss, it's just so devastating.

Italy300618 profile image
Italy300618

I just wanted to wish you the very best today, keeping everything crossed for you, will be thinking of you xx

lizzybee81 profile image
lizzybee81 in reply to Italy300618

Thank you so much

Peony85 profile image
Peony85

Hi Lizzy, I’m so sorry for your loss. I haven’t had this happen to me, but did do a lot of research into NIPT when I had it at 10 weeks. We decided to do this because the accuracy of the NHS combined test (NT measurement + blood test) screen was lower than what we felt comfortable with. Depending on where you look, it’s about 75-85% accurate, and has a 2-5% false positive rate. And there is always a chance that if the baby is moving around they won’t be able to get a good NT measurement.

Depending on where you are NIPT may need to be done privately. There is at least one of the tests - I think the Panorama - which says it can distinguish between a “vanishing twin” and the one that is still alive. We didn’t have this so chose the SAFE test due to its seemingly having lower rates of no results especially since we were having it at the earliest possible stage.

Wishing you all the best this week. I think we are about the same stage, I have my 12 week scan tomorrow and am still nervous even having had the NIPT 🤦‍♀️ I don’t think the anxiety will ever go away!

lizzybee81 profile image
lizzybee81 in reply to Peony85

Thank you so much, I can't tell you how much this helps! I was so afraid of posting thinking I was going to get abuse for being so "negative" it's not to me, its understanding, preparing for the worst and hoping against hope for the best.

I will be thinking of you tomorrow. Best of luck, thank you again xx

Peony85 profile image
Peony85 in reply to lizzybee81

Thinking of you today and hope all goes well on your scan! Xx

Sweatsour profile image
Sweatsour

Hi Lizzybee81,

I am really sorry to hear your news. I was in a very similar situation. Had a twin pregnancy confirmed at week 6 and I lost one baby in around week 8. Currently I am 24 weeks pregnant with second baby doing very well. In terms of you or questions:

1. I understand that you refer to genetic tests like Panorama or Harmony. Unfortunately they will not give you a result as there will be a DNA of both babies in your blood stream and the lab will not be in position to differentiate between surviving baby and the one that didnt develop. Amino is a choice. Personally I wouldn't go thos route until I would do nuchal scan. This is your point 1.3.

3. Nuchal scan together with a blood test gives an assurance at around 85-90%. My detailed scan was performed at week 12+2 and the bloods were taken a week beforehand at 11+1. The scan looks at fluid behind a neck, nose bone and measure other parameters like heart beat, head size, etc. Those are combined with blood test results and then you receive your adjust risk score. If this adjust risk score is 1:250/1:300 that doctor may advice you to do amino. Remember you will also have an anatomy scan at week 20-21 which will help assess baby health. I understand that neither of these will give you 100% guarantee but think about it in a way that 10 years ago Panorama or Harmony tests were not available at all so these were the only tests you could do. My consultant told me that he can not see any indication of anything being wrong with a baby and therefore he wouldn't recommend invasive testing . He also said that I will always have an option to do invasive test later in your pregnacy (week 30) which means that even if I would go to labor as a result of procedure the baby will survive.

1.2. According to NHS website 1 miscarriage for every 100 procedures.

2. Unfortunately I dont know.

If you have any other questions please let me know. I know how stressful it is for you.

Sweatsour profile image
Sweatsour

Hi Lizzybee81,

Just to clarify - I did Panorama test at around week 13 and got no result. The producent says that it can detect vanishing twin but not to access a health of a surviving one at such an early stage. Th producent says that it is possible to do this test to assess a health of surving baby if: 1. The other baby heart stopped before week 8 AND 2. Minimum 13 weeks have passed since the event. Apparently some tests were carried out and it confirmed that a DNA of the other baby can stay in your system that long and in some cases even up to week 20 post event.

Also the dr told me that if the other scan is still visable on the scans there is no point of doing this test as more likely there are still some DNA traces left.

I understand that this is not ideal. I am thinking of repeating this test at around week 28 and see if I will get result.

lizzybee81 profile image
lizzybee81 in reply to Sweatsour

I can't tell you how helpful this post was, thank you so very much. I’m so sorry you’ve gone through this, I’ve been floored by it, they say you won’t really understand until it happens to you, so much loss & grief it really can be overwhelming if you let it. 24 weeks, you must be feeling more reassured by the day, it then again I said that I’d be more reassured at 12, I don’t think I will relax until I’m holding a healthy baby in my arms.

I'm so grateful to this board, I think I would have gone round the bend by now without it x

Cinderella5 profile image
Cinderella5

Wishing you all the best Lizzybee, will be thinking of you! I have some of the same fears that you have, its awful to be focusing on the negatives all the time but its the only way I can get through it....self preservation I guess, preparing for the worst but hoping for the best. I really hope you get good news on Wed.xxx

lizzybee81 profile image
lizzybee81 in reply to Cinderella5

Thanks Cinderella, I'll be thinking of you too, fingers crossed we both get some good news. xx

Cinderella5 profile image
Cinderella5 in reply to lizzybee81

Thanks lovely!!xx

Chantysal profile image
Chantysal

Hi i just want to recommend a book called It starts with the egg by rebecca fett. I just finished it and it has so many important information She also discusses allot of things we can do to prevent misscarriage and the causes. Im about to get into my 4 th attempt of ivf and im hoping the changes iv made from this book will make a difference im feeling positive

lizzybee81 profile image
lizzybee81 in reply to Chantysal

Thank you so much for the recommendation, best of luck on your next round.

Mrs_MT profile image
Mrs_MT

Thinking of you x

lizzybee81 profile image
lizzybee81

Thank you so much hun. How are you doing? Do you have a 12 week scan date yet? xx

Mrs_MT profile image
Mrs_MT in reply to lizzybee81

I’m OK. Not great but at least not crying inconsolably. No scan date yet but I booked one for this Saturday privately (9 weeks). Does it help mentally preparing for all outcomes? I wonder if I should think of using the same strategy x

lizzybee81 profile image
lizzybee81 in reply to Mrs_MT

I've always been quite OCD about how I go about things so having an understanding what will happen with all the outcomes soothes my brain as without it it's "I don't know what's going to happen or what will be the result from there" at least now it's "X could happen and that will mean Y" so less variables if my crazy head makes any sort of sense!

Literally the only thing that gave me some comfort about the remaining twin is something my fiance said which was now they'll get all my energy and nutrition. I don't know if it helps you at all.

I'll be thinking of you and your little fighter on Saturday, everything crossed hun xx

Mrs_MT profile image
Mrs_MT in reply to lizzybee81

Thank you x. How are you going with your symptoms? Mine are so on/off at the moment. Been puking once a day and then suddenly nothing the next day. Doesn’t help my anxieties.

I’ll be thinking of you for tomorrow and sending you all our positive vibes (from all three of us - hubby, me & baby 1). Xx

lizzybee81 profile image
lizzybee81 in reply to Mrs_MT

No symptoms, none since 2WW not a drop of blood, a wave of nausea. I had sore boobs up till week 10 but they’ve gone now, a bit of a sensitive nose. I fainted at week 8 after not feeling well all day the only consistent symptom I’ve had is complete & utter exhaustion, I rarely go through a day without a nap. Thanks hun, everything crossed xx

josephnsn profile image
josephnsn

Hi,

Your blood test won't be accurate. I lost a twin in Feb 18 so they could only use the neck measurement and my age. This resulted in a high risk result. I phoned up lots of private clinics and some said they could do a blood test which is accurate others said it wouldn't be. I phoned up some leading London NHS hospitals in maternity which offer the same blood test the private clinics did and they confirmed its not accurate.

From memory the chances of miscarriage with amnio is 1-2% but you really need to check the latest figures. Your nhs hospital will give you this information if you come back as high risk. It is slighlty less if you have it done at a top hospital which is experienced at this. I was lucky to be referred to Kings in London who are supposed to be leading in doing this. I had the amnio (the consultant watched whilst a more junior staff performed it which did worry me) I had some bleeding as I was about to leave at the end of the waiting time after the procedure and they scanned me again to check baby was fine. Luckily I did not miscarry after this.

lizzybee81 profile image
lizzybee81 in reply to josephnsn

Thank you so much. The studies we've looked at say Amnio miscarriage rates are 1-2% but they've all said after 15 weeks, I've not seen any for any earlier. But I will look in to Kings, a bit of a trek but nothing unmanageable.

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