Twins one with Spina bifida - TFMR- how do I decide??

[Ellsbatt]

Hi everyone, terrified mum to be here. I'm 17 weeks pregnant (1st pregnancy) and have been told one of our babies has open spina bifida with accompanying chiari II malformation in the brain. We are really really struggling to process this. foetal surgery not an option for us because of danger to the other twin.. and nobody seems to be able to give us a clear sense of how severe the disability could be because every child reacts differently. My partner and I are 43 + 45 and both work fulltime. We just don't know how we could cope with a healthy newborn and a newborn with considerable extra needs. No family nearby. What really haunts me is the idea of her as a teenager in a wheelchair, missing out at the school disco, struggling to fit in and blaming us for having her. But I can't terminate until 32 weeks to protect the other baby.. and how can I get through that? Especially when this is partially a termination for lifestyle/ coping reasons and not solely about her health. Could i live with myself? Would love to hear from anyone who has been through a similar nightmare dilemma - and either chose TFMR or to have their baby and have made it work. We really don't know what to do. NB I've reached out to Shine to try and get in contact with other SB families. thanks so much...

Hi @Ellsbatt - firstly, sending love - this is an unimaginably hard situation to be in. My situation was a bit different, but I had a TFMR (single pregnancy) in May due to my baby having T21 and a heart defect. It was also my first pregnancy.

Whilst I've no doubt I would have loved my child unconditionally forever, I didn't want them to suffer throughout their life. I thought about my family's and future living childrens' future and made the most difficult decision I'll (hopefully) ever have to make. I know it was the right one for us, not that it makes it easier. But the choice was made with love. We chose to go through pain and suffering now, to save our child going through any type of pain and suffering.

I would just get as much info as you can over the next few weeks. Whatever decision you make will be the right one for you and your family.

How are you feeling now you've had a few days to process it?

Thanks for replying @Thornberry1 and sharing your experience, much appreciated. I think I am leaning the same way; take the short term pain over a very uncertain future.. its such a risk and such a lot to put our family through. I'm glad I have a couple more months to just sit with the choices and gather info. We had a very hectic day with the obstetrician and another scan yesterday (decided to pay for it privately so we could find an SB specialist and really take our time) which gave us a lot more info which was helpful. I actually need a bit of a rest from it now I think, going to take the weekend to try and focus on other things and give my mind a break. otherwise you just go a bit mad. Thank you again xx

Hey @Ellsbatt Great call to take some time out - been thinking of you and hope you're doing ok! xx

Hi @Ellsbatt how are you getting on?
I am in the same boat.pregnant with Twins but one won't have a happy and healthy life and I am now 26 weeks and having to wait until 32 weeks to have a medical procedure due to the other twin.
How did you cope? This is an impossible situation

I can't begin to imagine how hard that is for you. Having to terminate is always a difficult decision but this seems doubly hard

@Obione1 I'm so sorry to hear this. I'd be happy to share my experience if you want to DM me. Nobody should ever have to make this choice, I hope you are doing ok x

@Ellsbatt would it be OK for me to DM you about your experience? I'm waiting for amniocentesis results but it is looking very likely that we will need to make a decision for one of our twins to TFRM.

@tb4122 absolutely, happy to share my experience