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TFMR advice

(34 Posts)
39Suzy Fri 20-Apr-18 07:27:47

We made the heartbreaking decistion to TFMR earlier this week at 24 weeks as our little boy has a severe brain abnormality. We dont even know if he would have reached term and if he had, would have physically and mentally disabled, even to the extent we dont know if he could have breathed unaided. I know we are making the right decision and had the first part yesterday so cant feel.him moving and not feeling 'pregnant' but am just crying constantly.
We went through the bits that come next and have agreed to an autopsy (with the geneticstesting we are having we are hoping for some answers.... our initial results were clear and the nature of the malformations indicate interuption/ infection in weeks 5 to 8) but am struggling with the decision to see him after he is born. Anatomically he will look perfect, just like a small baby, and would welcome any experience with this. I think i am scared as i dont want to be haunted by the image however, think it will be best in the long run. I am hearbroken

Fatas Wed 03-Oct-18 17:47:43

Thought I’d update on here for anyone going through this. CVS results confirmed baby was t21, I was already booked in for TFMR at this point (consultant had confirmed that due to hydrops and septated hygroma baby was very poorly and would miscarry anyway)

I don’t want to offend anyone with babies with t21 as I know my choice is not always agreed with, but there are many babies with t21 who have severe medical issues and don’t survive to birth- as indicated by my scan. I think there is a common misconception about this generally- not necessarily amongst those receiving the diagnosis.

Anyhow, took 14 hours and 4 doses for pills to work and then an injection and then another two doses after injection for placenta. That didn’t work so ended up having ERPC 20 hours after everything else had passed to pull out retained placenta.

Seem to be recovering okay physically. I didn’t ask to see fetus, I found it hard enough feeling it being delivered. I was asked if I wanted a memory box and I said no to this too.

I feel a bit like they may have thought I was cold hearted, but I just couldn’t face it. I think if pregnancy was a bit further along and baby was more developed I would have opted for both of these.

Obviously I am devastated, but I felt the choices I made were best for me at that moment in time.

I hope no one has to go through this, but unfortunately someone on here will one day- so if you ever want to get in touch for an offload, questions anything-please do.

Sending my thoughts to anyone who is going/ gone through this- it’s truly bloody awful. X

39Suzy Thu 04-Oct-18 17:35:26

I am sorry for your loss @fatas. Sending you lots of love x

nervousFTM Thu 04-Oct-18 18:47:12

Sending all the love @Fatas - so so sorry you've had to go through this xx

PoppyJ1 Sat 10-Nov-18 01:10:24

Hi all,

I know this thread is intermittent but I wanted to add my experience. I'm so sorry to hear of all your losses and what you've all been through. I've just been through this and it has truly been the worst time of my life.

I found out at my Harmony scan at 10w5d that my baby had a brain abnormality that was unlikely to be compatible with life. I had to wait until 12 weeks to confirm in hospital, but the issue was so obvious it was the first thing we saw. The doctors aren't sure exactly what went wrong but settled on severe hydrocephalus and aqueductal stenosis; baby's head was measuring a whole week ahead and his brain was not filling the space. We were told he would die very young, possibly immediately because he may not be able to breathe or feed. We opted to terminate because we couldn't risk putting him through that. We got our Harmony results on Thursday (all low risk and male gender confirmed) and terminated yesterday. I was given hand and footprints and told by the lovely doctor hat I have plenty of time to try again (I'm 36 and have no kids, but two MCs before this).

I feel very lucky this was picked up early; I can't imagine how terrible it must have been for those of you to go through this so much further into pregnancy. I am also relieved that following the procedure, I am 100% sure we made the right decision. But it is truly heartbreaking and I'm finding it hard to be around people, especially putting on a brave face around children (my DP has 4 older kids and we are telling them today).

I am keen to try again ASAP but DP wants us to go through counselling for both the grief and the impact of TTC and MCs on our relationship.

Fatas Sun 11-Nov-18 13:35:32

I’m sorry to hear you’re going through this. I just wanted to hide away and not see anyone. I thought I was recovering okay, until I went back to work. I spent the weeks I was absent away from work tucked up at home and spending time with my 10 month old and now I’ve had to enter the big bad world again! I’ve not yet returned to normal- my hcg is stuck at 25 and I saw something (small) come out the other day, also still having streaks of blood every few days.

Give yourself a bit of time to heal, take your folic acid, eat healthily and look after yourself. I’m hoping to go for genetic counselling, been referred but not heard anything yet. I think I’ve made my mind up about trying again now. Someone said on here that when the hope outweighs the fear that’s when it’s time and that resonates with me.

Sounds like you’ve really been through it with two miscarriages and then this, I know someone who had two miscarriages, tmfr at 24 weeks and has three healthy babies.

I was lucky that after my miscarriage I had a lovely baby boy and it helped with my recovery, can’t imagine having to go through it with no children. Sending my thoughts to you

PoppyJ1 Wed 14-Nov-18 03:47:45

Hi Fatas,

Thank you so much for your kind reply and for the encouraging story about the woman you know with the 3 kids now.

I'm really sorry to hear you're having one of those endless physical processes. My second MC was a bit like that. I found it puts the breaks on the emotional recovery if you're still bleeding and passing things, however small. It's a kind of limbo period in which you want to start feeling better but you can't get from one toilet stop to the next without some kind of anguish smacking you back down.

I am sure part of you will feel better when the HCG clears and you know the physical process is over, especially as it brings the fresh hope of a new cycle. The emotional obviously takes much longer but I do think sometimes the physical trauma is underestimated, especially given that it can develop into general health anxiety and trigger horrible memories during normal menstrual periods.

Wishing you some relief and peace soon and of course all the very best when you try again.

39Suzy Sat 05-Jan-19 19:18:49

@fatas hope your recovery is going well as sounds like it has been a rough ride.

@poppyj1 i am so sorry for your loss.

I dont think there is a right time to try again and no matter when this is, it is a very anxious journey balancing ongoing grief and hope for the future. I am now almost 26 weeks with a rainbow little brother. Everything is going fine and having regular scans and checks but passing that 24 week stage i was last time is hard plus despite all the scans being well, still feel like someone has made a mistake and we will get the 'i am really sorry' chat.

Wishing you both all the best for a positive and healthy 2019 x

39Suzy Sat 12-Jan-19 09:48:57


39Suzy Sat 12-Jan-19 09:49:30


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