Awaiting medical termination for T21, please share your experiences #Handholding

[Hopefooll]

Hi all, I just wondered if anyone at all is going through the hell Im experiencing right now. I found out I was pregnant with my 4th and final baby 15wks ago. And since then it has been a nightmare. One bad news after another. We were told we had a 1 in 20 chance of Downs and had the Nipt test which came back as high risk. Then today I had an amnio to confirm diagnosis. Our nuchal test at 12 weeks was normal and there were no soft markers but today all that had changed. The consultant said the scan showed signs of possible heart defects and said he has noticed some more soft markers which were not present at the 12week scan and this was confirming the screening tests so far. Anyway for many reasons we have decided not to carry on with the pregnancy and I am now waiting for a termination next week. We are absolutely devastated and I dont even know how I feel Im so numb. Thank God we hadnt told the children.
Part of me wants to try again when all this is over but at my age of 45 I am terrified that the same thing might happen again and I just cant imagine going through this again. And to top it all off I am still suffering from severe nausea and
pregnancy exhaustion. Thanks for listening. Hugs to anyone who has gone through this or is going through it now. x

OP, sending huge, huge hugs to you and your partner 💙
I had a TFMR 2 years ago on 24th June, different diagnosis and gestation (issues weren't discovered until 27 weeks, TFMR 32 weeks), but I understand exactly how you feel.
Ending a wanted pregnancy is so, so unbelievably hard and is such a complex kind of grief.
Have you spoken to Arc? They are a wonderful organisation who support families through this devastating process.
There are also many different TFMR groups on social media, especially Facebook, which I found were lifesavers for.myself during the deepest depths of my grief. Knowing I wasn't the only one who made that horrible decision was helpful. I also have read countless stories on those pages of TFMR's for T21.
I am more than happy for you to message me through here if you need a chat at all or have any questions.
Just remember, you have done nothing wrong.
Xx

Thank you Littlelighthouse, will definitely check out ARC. I am so sorry to hear you had to go through this terrible experience too. Sending love to you and so glad to hear you got through this. Life can throw the biggest curves.
I had a weird moment when I woke up this morning and for a sec after waking up I didnt remember but then of course it all floods back that Im in the middle of hell!

Hello Op,

I'm sorry that you're going through this. I went through the same and, after much consideration and research, made the heartbreaking decision to TFMR in April.

There is nothing worse than having to make such a heartbreaking decision to end a much wanted pregnancy. I had experienced miscarriages in the past and this has hit me much much harder because of the complex additional layer of emotions including so much guilt.

As this is still relatively raw for me I am still working through this but I would also recommend that you speak to ARC. After your TFMR you can have access to a forum on the ARC website for women who have gone through similar experiences. I'd also recommend getting some counselling - your midwife should be able to refer you to some suitable services. There is also a podcast called "TFMR mamas" which I've listened to.

In terms of the experience in hospital itself - it was all kinds of difficult but I am grateful the midwives treated my previous baby boy the same as they would have treated a living baby. They helped me dress him in little clothes and we got to spend 2 precious days with him. One regret I have since had is that I wish I had of thought to take a storybook with me to the hospital read him a story. There's no way I would have assumed that I would be up for this beforehand.

(Note that some women prefer not to meet their baby after delivery (or don't have this option( and this is completely understandable - there's no right or wrong here. I just wanted to share my experience).

Look after yourself. Thinking of you and sending you lots of love and strength.

Thank you notes1, sending you lots of love and hugs. Thank you both again for responding, its really means so much to me during this time. The days are long when you are going through this. One minute I feel like Im handling all okay but then I suddenly burst into tears. Littlelighthouse is right, the grieve is complex.
Sounds like you were able to say goodbye properly notes1, so glad the hospital treated you well. I will definitely need counselling to get through this.
Here’s hoping for brighter days for us all. Xx

Notes1, I'm so sorry to hear you're experiencing this too.
Almost two years on, there are definitely times that are more triggering than other, but I can promise it does get easier. You will find a way to honour your little ones.
I'm not sure whether you know the gender or have named your baby, but maybe consider whether this may be useful for you too

@Littlelighthouse thank you for saying this - I appreciate it and it's good to be able to know how people are feeling who are much further along after a TFMR. We have given him a name and I'm grateful we have a burial for him to visit (which I have been doing lots)

@notes1 I completely agree, I think having a spot to visit can be really helpful. My son was cremated, but we have a rosebush for him at the crematorium.
Thinking of you both, it's a grief like no other x

I'm so sorry you are going through this OP. I had TTC 4yrs with no issues found, but my 1st pregnancy had trisomy 13, patau syndrome. I chose TFMR. A few things to note about medical management that I wished I'd know. I was 12 weeks, so it might be a bit different as you are farther along:

• Empty your bladder before they insert the vaginal tablets and then put on a massive pad. The hospital usually have large, nappy like ones.
• Try to stay lying down at least an hour after the tablets are inserted
• The tablets can make your feel nauseous, vomit, get diarrhoea and/or cause a fever. My face was like a beetroot, but paracetamol helped. These are side effects that resolve quickly- not allergic reactions
• You might see part of a tablet come out, a whole or a white gravel like paste when you wipe or go to the loo. Don't panic- the meds will still work
• Sorry if TMI, but they might ask what you would like to do with the baby such as a private funeral, group cremation etc.

Just remember that this isn't your fault and you aren't alone. I'm happy answer any questions you have- either on here or via private message ❤

Thank you CC4, this information is definitely very helpful. I have had all my consultations pre
procedure which is booked for next Thursday. I have to say I felt quite scared after the explanation from the nurse I spoke to but your explanation makes it sound more bearable.
The waiting is terrible, and this is turning out to be the longest week of my life.
Sending much love, I hope you went on to have a healthy pregnancy after this ordeal. Xx

@Hopefooll I'll be thinking of you on thur and wishing you well. Feel free to private message me.

No, unfortunately, I have never did go on to have a pregnancy to term. TTC 13yrs, lost 3, multiple rounds of IVF and absolutely no reason for fertility issues found. In fact my egg count was higher than normal for my age- but sometimes it just doesn't happen- despite IVF and modern advances.

Take care op, be kind to yourself and remember that this isn't your fault ❤