TFMR 29weeks

[Riri444]

Hi,

I'm 25 weeks today. At 20w scan, we were told our baby has ventriculomegaly (enlarged ventricles) which has since progressed,
they later found a VSD (hole in heart) and Microphthalmia which suggests our little girl will be severely disabled if we continue with pregnancy. Drs can't be certain but think she won't be able to walk, talk, eat or communicate.

Amnio was neg, MRI confirmed above and that baby's brain is not developing properly. Exome sequencing found no definitive cause. We are waiting for a final MRI at 28 weeks which will give us more info about prognosis but it's looking like things will not improve.

We are thinking of TFMR and wondered if anyone has terminated so far along and if they can offer any advice. I'm so worried and scared about the birth.

No experience but I just wanted to say how sorry I am this is happening and sending you so much love.

I’m so sorry

I had to terminate a little earlier than you, but for similar reasons - clear amnio, no specific diagnosis but awful prognosis and scans getting worse each time

I found the support line at ARC really helpful , and also had a (private) scan at the fetal medicine centre for a final second opinion before making up our minds to terminate

www.arc-uk.org

I’m going to sleep now but DM if you want and I’m happy to give you more on my experience, but I would really recommend trying to speak to ARC also

sending you lots of love and strength 💐💐

Hi OP, I've only just seen this thread but I wanted to comment.
I had a TFMR in 2021 for the same reasons. We found out at a private scan at 27 weeks that our son had ventriculomegaly. Exactly the same as yourself, the MRI confirmed our worst fears and we had the tfmr at 32 weeks.
Firstly, I'm so, so sorry that you find yourself here. You have done nothing wrong.
It's such a personal choice, and you will find so many people want to share their opinions, but you must do what your heart says is right for your baby. We personally couldn't bare to watch our son struggle in life. It still pains me everytime I think of what we had to go through, but when I think of the alternative of him being here on 24 hour care, or probably even have passing away by now, it reminds me that we did save him, though it definitely doesn't always feel that way
I'm not sure where you're now at with everything, but please feel free to message me if you need a chat or want to know anything more. The Facebook TFMR groups are really useful too.
Sending you so much love 💕 xx