Tfmr-support needed

[Elbon36]

Hi all
I have been following many threads since the day I found out I was pregnant.Unfortunately although all appeared okay until 10w the Harmony test and nuchal scan showed t21 and heart abnormality and cvs confirmed it.
I’ve been devastated since then it’s been a week since I got the results and booked tfmr (12w+6) with misoprostol for losening the cervix and then surgical abortion after with sedation. I’m scared.
We knew that it was the right choice and had discussed this before getting pregnant so we don’t have second thoughts but I feel so scared about the procedure and very very sad and angry for this happening to us. For being so unlucky.
I just wanted to share it; anyone has similar experience? I’ve never posted anything but I feel that it’s good to reach out for support and I’ve seen from other posts how warm and kind people are to each other here.

Hi Elbon, so sorry to hear that you are in the same boat as me. The bloods on the 12 week scan showed risk of 1 in 41. We held on to the hope of 40 out of 41 would be good news. But our SAFE test result showed that we were the 1 in the 41 without 95% likelihood. We held on to the 5% chance until the amnio results came back and confirmed the diagnosis. We didn't want that sort of life for our child, so we're booked in for a surgical tfmr later this week. It'll be 16 weeks then. So, it's been a whole month of being upset now, and it's not over yet. Test results have been slow, and now I'm having to coordinate between the hospital, who will only do the medical tfmr and BPAS, who do the surgical procedure. If BPAS run scans on the day and decline to do the procedure, then I have to go back to the hospital and try to get a date for the medical tfmr. Just adds to the stress, not happy about this.

What keeps me going, is knowing that we are making a head decision, not a heart decision, its the best,kindest thing we can do for the child. I've also been reading articles which suggest that this is very much a freak accident of nature. Nothing we could have done before or during the pregnancy could have changed the outcome- it's literally a copy-paste error. I've heard of people who had a Downs baby but all their other kids are perfectly normal.
Keep your hopes up.

So sorry you're both going through this. My circumstances were slightly different but I had TFMR in November at 20 weeks after a fatal diagnosis so can offer some advice. I didn't have surgery as I was too far along so can't offer guidance there but...

Things I've learned:

• The 'ugly feelings' are normal. Allow yourself to feel them and understand it's completely normal.
• The grief hit me at random times (worse at night when trying to switch off) some days were ok, some days I couldn't get out of bed.
• Don't rush to go back to work as you can't anticipate how it will affect you (it hit me about a month after)

Things that helped me when I was ready to look at them:

• The ARC forum (protected with passwords etc) and ARC charity
• Asking for a memory box even though we weren't sure if we wanted one at the time
• 'The Worst Girl Gang Ever' podcast has been a godsend and has helped me through some dark moments
• Reaching out to your GP - I became quick to anger over small things, developed panic attacks and night terrors as a result of the trauma. Still waiting for therapy but have been given antidepressants which have helped. Don't be ashamed to admit you're struggling.
• Contacting the 'aching arms' charity should you need to.

So sorry this is happening to you both. I've had 3 losses in the last 12 months and know how utterly unfair it feels. Xx

Hi @Elbon36 💙

I had a TFMR on the 23rd of this month. I know what you’re going through and I’m so sorry.

I had to have medical procedure at almost 21 weeks pregnant which meant I had induced labour. It really is awful that we have had to go through this and we have been dealt this hand in life. I hope you find strength to move forward

Hi, I had to tfmr on Sunday. It’s absolutley heartbreaking. I’m so sorry you’re going through this. Much love and strength to you xxxx

I had a surgical TFMR on 28th May at 16 weeks pregnant due to our baby girl having Edwards syndrome and spina Bifida. We found out at 12 weeks that something was up from the neck measurement and bloods placed us at high risk of both trisomy. We went back at 14 weeks for CVS and they were not able to do it due to my bladder being close to the placenta. Another agony of waiting several weeks until Thursday 27th when we had the amnio. Whilst scanning before the amnio the Doctor discovered spina bifida and half her heart working she even got another consultant to confirm her findings😭 We decided to still have the amnio and we made the decision to end the pregnancy. I opted for surgical as I had c-sections with my other two children and I couldn’t put my husband and myself through giving birth to her. I remember walking to theatre sobbing and waking up from the op feeling so numb and empty. My body even now just aches for her. A week later the amnio confirmed Edwards Syndrome and that baby was a little girl. We decided to call her Isla.
My words of comfort is to take each day as it comes and surround yourself with close friends and family who will help hold you up on the bad days. I’ve been signed off work until end of July and feel fortunate this is fully paid as some people are not in that position.
One thing to come out of this awful traumatic experience is realising how much I love my husband, children friends and family. Life will not be the same as before as you learn to live with grief but use our babies are not in pain or suffering. Hugs to all you ladies no one understands unless they have been through this xxxx

Hugs to you all. We have a tfmr booked next week. Just awful isn't it