Please help. T21 failed amnio

[Mrs173]

Hi all.

I found out 2 weeks ago at my dating scan we are high risk for t21. Since a nipt has come back as high risk and with my bloods (1 in 2 chance) and the high NT reading. We know it’s t21. I went for an amnio today and they couldn’t get a sample, they said my membranes hadn’t fused yet so it wasn’t possible and that I had to wait 2 more weeks to try again. I was absolutely heartbroken that I would hve to be pregnant for 2 more weeks before the test when I know the outcome. I am dreading feeling this baby move before I terminate and know it will make it a lot harder for me.

They hve said my only options would be to terminate privately but I don’t feel I can do this given that compassion etc won’t be the same given my circumstances and it being a very much wanted and planned baby also does anyone know if in the uk going through BPAS allow your husband to be present for a medical termination? I cannot do this without him. I just don’t know what to do.

anyone had a BPAS experience with husband allowed in?

i also feel like I need the microarray results to know if we are carriers etc

I'm sorry you are going through this, I was in the same position at Xmas. We had a cvs rather than wait for an amnio as could be done earlier.

It confirmed our worst fears and in our NHS area the only option for tfmr was labour and delivery. I'm not going to lie it is a horrible process but getting to see baby and being able to find out they had many other issues that would have made full term unlikely was a comfort in knowing we had made the right decision. I feel I healed quicker physically and mentally than I would have by having a medical termination.

3 months later I got pregnant again and we are expecting our rainbow girl in January.

Lot's of great support groups out there for advice and help x

Hi there, how are you doing? Not sure if you are still waiting, deciding..
I just went through this in June of this year. I remember exactly the torture of it all. Feeling the baby move.. becoming more pregnant each day. This is the worst part.. I was 15 weeks when I terminated.
I had a surgical not medical termination at BPAS and my husband was allowed in.
I had to organise it all myself. Which is also the worst.. essentially ringing abortion clinics for a very much wanted pregnant. (Ivf)
When if you are not looking for advice anymore.. I hope you are ok. It really is the worst. Sending lots of love

Thank you both for your replies. They told me at my first fetal medicine appointment I couldn’t have a cvs as I had a very posterior placenta so I accepted that and waited 10 more long agonising days for the amnio. That was Monday when they couldn’t get a sample and said because my membranes hadn’t fused I’d hve to wait 2 more weeks until they would try again. Luckily I was referred to Birmingham womens hosp who kindly agreed to attempt and amnio very quickly. I had 4 attempts made yesterday (4 different punctures) and finally on the last one they got the fluid! I was so relieved. So hopefully I have the results (which I already think will be t21) on Wednesday/Thursday. We also have a heart defect that they gave an in-depth scan of and they seemed like they were of the opinion we shouldn’t continue the pregnancy as there is very little hope and a huge amount of complications possible to be seen at 20 weeks.
diesnt make it any easier and feeling all the guilt along with sadness but I know it’s the right decision for our family and our living daughter.

now I’ve had the amnio - provided the results come through from the sample ok then I will continue with what I had planned in this outcome to have a medical (labour and delivery) at my original hospital. I am absolutely dreading it and am not sure how I will ever feel like the same person again.

thanks again for the handhold in this awful
time xx

hello my lovely,

such a relief that they could do it. Poor you. So many attempts. This is a trauma that you won’t yet compute. I’m sure you are just getting through each day.

im sorry about the heart defect…I had scans where they said that there was no obvious signs/nothing physical.

This almost made the guilt of the decision harder Potentially in a way I hope this makes you feel somewhat easier about your decision.

Midwife once said to me. Make your decision based on your family no one else.. same as you. I have a two year old and I couldn’t never get past the thought of him having to look after and limit his life for his brother or sister in the future after we maybe are gone.

have you called ARC? I had 4 weeks from finding out on nipt to my termination (it was the jubilee and tests delayed etc) and I rang them every other day. Just to mostly cry down the phone. They are the best.

now you have the wait.. there is an inevitability to the results.. but that didn’t stop me from googling every single false positive nipt scenario. I’m sure you have been through this..
when I had the phone call confirming the results I wasn’t shocked the bottom had already fallen out of my world.
things do slowly get easier after wards. This is the worst bit as I said.. it’s not easy but it’s not the in between torture.

please feel free to private message me too.
I found a good friend now through mumsnet going through the exact same thing back in June. Couldn’t have got through this without her. Because no one understands it quite the same as someone who has been through it..
x

@Fanny81 thank you for replying again. You are right it really means so much to hve someone to talk to who literally gets it as no one else does. It’s been 3 weeks now since I had the scan that showed the very high fluid reading indicating a problem and it’s been the longest 3 weeks ever. I guess I still have at least a week to wait for a TFMR as by the time the results come in they said they then have to make the arrangements and it can take up to a week!! So I will be the same as you - roughly 4 weeks from first finding out until “the end” every scan I’ve had has been so hard seeing the baby kicking around and all the sonographers joke about baby playing with them when attempting amnio etc and it makes it so much harder!

i actually found out yesterday that I have a “very anterior” placenta (they had to do the amnio transplacental where they had to go through the placenta to get to the fluid!!) so I would apparently have been the perfect candidate for the cvs that I was told over 2 weeks ago couldn’t be done. She said yesterday they can move a little but never from front to back or vice Versa so I’m really angry that I’ve had to wait 2 more weeks of no answers for nothing!!!
I’m 16 weeks tomorrow and my clothes are all so tight now as I have a definite little bump but I can’t bear to wear maternity clothes knowing what will happen. Did you have this problem?

my daughter is almost 2 too so it’s the same thought for me. Did you tell people your situation? I hve told most close family as I see them too often for them to not know something is up and I’m not ok this last 3 weeks! But I really will struggle with how some people will feel about “the choice” we have.

how are you feeling now? Do you still get very upset about it all or hve you been able to make peace with your decision?

i only called arc once the day after I found out the high Nt reading but I should call again as they were so lovely.

Hello lovely,

I bet you are angry. Every extra day is torture. for gods sake.
Also you are angry in the first place as none of this is fair. You are the 1% - how are we the 1% or even less than that?(I was 40 so that was my stats)
those scans with the kicks are ingrained on my soul. I had a cvs privately in the end and the consultant just played the heartbeat to me without thinking. Awful just awful. First time I heard it and the heartbreak…

Yes the looking pregnant and trying to hide it. especially as it’s your second.. torture.. I felt too like it was somehow illegitimate to wear maternity trousers. Like I wasn’t allowed somehow.. So I just worked from home and wore leggings.. no one but us can understand this. I stopped taking my pregnancy vitamins too. I gave up.

it gets easier..much easier. Take gear in this.. Yes I’m not the same person I will always carry this. We are mothers.. it’s the opposite of what we we should do. But take heart that I would still do the same thing now. I know it was the right decision.

I chose to tell close people during (2 best mates, mum, sister in law) but mostly disappeared and cut myself off. I was a zombie..sure you are??
I was also terribly sick as I’m during pregnancy so just retracted.. After I told people who I thought would understand. Some I regret. Some were excellent.. Some I felt were not worthy of the information in hindsight.
It’s hard I wanted to scream it from the rooftops after so much but people also say the wrong things. They don’t mean to.. they just do.
i honestly think no one, I mean no one can say what they would do until they are in the situation..

i hope your almost two year old is dragging you through too. Thank god for them! Makes you get up in the morning.

Are you still working? (If you do)

Are you going for in an induced labour? Sorry I think you said this earlier that you were.
I was in two minds (midwives were very anti surgical) but settled on being asleep in the end.

xx

@Fanny81

really appreciating the chat. Thank you xx

yes it’s true that we are already in such a small rubbish percentage (I was 30 at conception so I definitely didn’t expect this - not that you should expect it at all being older but I was always aware of the increasing stats as I got older)

yes I think they actually have to play the heartbeat before and after to record the sound waves to prove that all was well after the procedure should it cause a miscarriage- I had this done 3 times (my failed cvs, and both aminos) and they play it before and after so I’ve heard it so many times. On Friday they were actually like “see baby is perfectly happy” and I was thinking please don’t say that to me. It was heartbreaking.

I’ve stopped taking mine too and then I feel guilty I’ve given up. It’s an awful feeling. I’m glad you still stand by your decision- I think I always will know it’s the right thing for our family too and so grateful my husband and I are on the same page about it all as that would be even more difficult.

I’ve been sick on and off more nauseous and off lots of food that actually sick but that has happened too (every dirty nappy change some days!!!) I’ve been absolutely exhausted though like struggled to make it until 7pm and that part still hasn’t worn off yet.

oh I am so unbelievably grateful for my daughter. She’s been the light in this darkness and my heart goes to anyone in this position without a living child to carry on for - she’s still bought smiles to everyday despite the sadness.

yes I work for my family business so it’s been too difficult to not work but also makes it more complicated in the sense that I can’t escape the situation even at work. I am planning to probably have 1-2 weeks off in total (the week of it and the week after)

yes I’ve decided to go for induced labour - how many weeks were you? As I will be 17 weeks I felt I wanted to have the choice to see my baby and hope that it will help me with grieving. I completely understand the other choice too though. I had had a missed miscarriage surgically managed before and had to go through BPAS due to nhs wait times and I really really struggled with it (the terminology and they kept telling me to use contraception and offering me condoms on the way out!!!) so didn’t feel I could put myself through that again for another very much wanted baby. I had said if I was 13 weeks or so I think I may have chosen surgical option but this one felt “better” for me. sorry I’ve just read again you were 15 weeks. Do you think you will TTC or IVF again? Sorry if that’s too personal and you don’t want to answer I understand.

how long did it take you to get over the initial grief and return to some kind of normal? Xx

Hi there,

how are you doing?

are results due Wednesday you said?

how soon did the hospital say they could book you in?

I still remember the exhaustion too. Especially with a toddler. Poor you. I used to say during it I’m mentally and physically sick. It’s a living nightmare that no one can quite grasp.

re the vitamins. I remember my husband said to me when I told him I had stopped, those vitamins are for you really not the baby so why stop them? I didn't start again but I thought it was a good point. I didn’t feel I had the right to look after myself.

I completely understand the induced labour. It’s a closure to it too. I sometimes regret not seeing the baby. But I think I was in too much of a state to handle anything else… you have to do exactly what you feel. Also only you know what you want.

I had mine with bpas - they were actually really lovely. Maybe I just struck lucky with a clinic - they were all really sympathetic and gave me a private room etc. it felt awful essentially going to an abortion clinic though with teenagers on thier phones..

No not too personal at all… it’s all personal!
luckily i had frozen embryos left so I put another back in September and I got pregnant again but then unfortunately just miscarried 4 weeks ago. I was only 6.5 weeks.. (age probably again!)

it all happened naturally and no intervention needed. It was awful but there was some peace in knowing it wasn’t meant to be and wasn’t traumatic like what we are/have been through. I was so gutted and I am still of course.

I will say though being pregnant made me feel so much better. I felt guilty for feeling better but it did.

So maybe think on to this.. if that’s what you may do next. But I also cracked on as I have to with age.

You’ve also had a miscarriage too. I’m sorry. Some of us have all the luck!

after I had the Tfmr I took two weeks off work.
I think it should have been more looking back.

I needed for my body to stop being pregnant and also just to go on long walks with the dog and cry… maybe think if taking off some weeks if you can? Give yourself a break as at the moment you are probably living on your nerves and day to day. we also went on holiday soon after which helped.

I’ve also have had counselling which had helped tremendously. Even just to cry at someone. I have mine private but my mumsnet friend who had a tfmr just had a referral from nhs and it’s free. I should have done this.

i noticed that during it all and for a few weeks after I couldn’t find anything funny except my son. This came back after a few weeks. This was therefore probably when I got over the initial grief. For me when I’m started trying again with ivf I felt I had they moved on a bit more. As I said I found the during the worst bit.

have you called arc again? They are also very good with knowledge and advice on the situation.. also just to cry down the phone.

have you got good support from friends and husband too?

x