Looking bad for one twin after IVF

[CAS2]

Hi ladies

I hope you are all ok and feeling strong.

I am writing this in case anyone has gone through anything similar. After 3 rounds of IVF at 40 I finally became pregnant after a very good last round of IVF, ending in two transferred grade A and even some frosties (which we never had before). At 7 wks viability we were told there were two strong heartbeats, and we were really so happy.

So fast forward to 13 wks and I have just had my dating scan, and one twin is seriously poorly. There is fluid under the babies skin, NT is high and fluid down back and all under tummy. The consultant says he thinks it's a chromosomal, heart or lung abnormality, and that its heart will stop. He says we should seriously consider selectively terminating, to minimise the risk to the healthy twin (which still risks 5-10% chance of losing the other healthy twin) as continuing and losing the twin later on could cause a lot of problems.

I asked for a couple of weeks to see if the twin improves, or passes naturally to minimise any need for anything invasive. In the meantime I had a NIPT to check for Downs, Edwards and Patau and awaiting results. At the NIPT they did some more scans and my poor poorly baby was drinking and moving about a lot, waving its arms, and not looking on the verge of giving in.

My rationale head is telling me to do all I can to save the healthy one, but my heart is shattered into a million pieces and I don't want to give up hope on my second twin.

On top of all this I have raging morning (noon and night) sickness.

I'm not sure to post this here, or NCT or another forum, and may post in all to try and see if anyone has been through similar with twins. I can only find examples of singletons (some of which miraculously improved and others who didn't). Any insight into losing a twin or selective terminations, stories good or bad, would really help right now.

Thanks,

CAS xxx

[AnnieAnnie]

I have no experience but just wanted to say how sorry I am that you are going through this. I hope your poorly twin's health improves. Must be heartbreaking to be told this and being given a decision to make after everything you've been through to get here and to see him/her still fighting on. Sending lots of luck and hugs xx

[CAS2 in reply to AnnieAnnie]

Yes it is, and so hard to find anyone going through/been through similar. Thanks for your message and taking time to reply x

[Kyell2]

I’m so sorry you’ve had this news. I think I would have done the same as you and asked for some time to decide and come to terms with the news.

Sending hugs your way xx

[CAS2 in reply to Kyell2]

Thank you x

[Elynn]

What a dreadful situation to be in, lm so sorry. I have no words of wisdom , just want to say lm rooting for you. X

[CAS2 in reply to Elynn]

Thanks a lot xx

[Cinderella5]

I am so very sorry, I saw your post earlier and didn't really know what to say but.... I think they way that you are proceeding is just what is right for you all. Take your time, get your NIPT back? I cant even for one second imagine what you are going through and no advice whatsoever....just that I'm thinking about you all!!😢 sending so much love that cant be expressed in a message!!xxxx

[CAS2 in reply to Cinderella5]

Thanks, that's really kind x

[Lots8788]

so sorry to hear this x no words of wisdom but just wanting to send lots of love and hugs x

[CAS2 in reply to Lots8788]

Thanks

[Scarlett13]

I think asking for more time to decide is good - and having those tests done. If they do remove the poorly twin, how risky is the procedure for the healthy twin? Are the doctors urging you to do this rather than waiting to see? I can’t imagine how hard a decision this is for you. Are you with a partner and what do they think? Best of luck and lots of love and I’m so sorry x

[CAS2 in reply to Scarlett13]

It's a small risk to the healthy baby if we terminate and it's a big risk to the baby if the poorly twin dies later in the pregnancy. The doctor has given the poorly baby a 95% risk of dying before birth due to the amount of fluid putting pressure on its heart. I need to see the test results first to try and see if the condition is compatible with life. I can only hope at the next scan it has improved or absolute worse case, passed naturally so at least nothing invasive has to happen.

[Scarlett13 in reply to CAS2]

I seriously hope the twin improves or passes naturally and takes the decision off your hands xxxx

[Alisha79]

Hi,I hope ur ok. I have been thru the exact same thing with my twins. Everything u said is wat happened to me. We were told one twin was very poorly and NT was high and it had fluid around the stomach too. They told us it could be heart defeat or chromosomes problems. We had another scan at 13 weeks n was told to come back in a weeks time but the doc was 100% sure it would have passed away by then. I refused to terminate it But they kept insisting on us to have it. I told the doctor when it dies on it’s own I won’t feel that guilty that I killed him/her. We were gonna come back n do the amnio testing for the Down syndrome n all the others on week 14. When we went,we signed the consent form n went in for the scan to check if the baby was alive but sadly it passed away so we didn’t do the amnio test brcythe other baby is healthy. I’m currently 32 weeks pregnant with just the one.

It’s very hard situation to be in n I do feel for u. I pray it makes it. All the memories are coming back to me. It’s been so tough. But if u wanna ask me more questions message me.

I hope everything goes well for u n ur babies. ❤️

[CAS2 in reply to Alisha79]

Thank you for replying Alisha and I hope this hasn't brought back too many painful memories for you. I really appreciate your message though. I have a feeling the same may happen to my poorly twin. The fluid is so much around its back, tummy and even a little on top of the head. When we went for an NIPT we had some scans and the guy showed me the babies from the head down and I could see all of it all around the entire baby. I don't know how it's surviving this far but then it was so wriggly and drinking the fluid and looked completely normal besides this. I went into mum mode 'stop drinking the fluid as you can't deal with it' in my head!!!

I felt strangely protective of this baby at the first scan even before they told me the news. Maybe it's an instinct.

I want both babies so much, but feel like it's not going to happen I feel like the doctor will continue to advise selective termination, and I don't know how I could do it. But then I'm so scared I'm putting the second baby at risk too.

I'm really glad you have made it to 32 weeks without any problems. Have you continued to be monitored closely during your pregnancy?

xxx

[Alisha79 in reply to CAS2]

Hey,it’s brou back bad memories for me but we have kinda dealt with it n we are ok. I pray ur lit tones are ok n will make it. I decided to stay at the twins clinic as they monitor me very closely. Sadly the other twin has disappeared as we can’t see it anymore on my scans. It’s going to be even more hard when this baby is born in 4 weeks time as I’ll be thinking I shud have had two babies not one :(. But i was told maybe the fluid around baby will disappear or reduce. I pray it does for ur baby. Take each day as it comes n see what happens x

[CAS2 in reply to Alisha79]

Thanks Alisha. I hope your new baby brings you so much happiness in 4 weeks, despite the pain of your lost little twin. My next scan is Tuesday so I'll have to see what that brings, and keep everything crossed. Thanks again for sharing your story with me xxx

[Alisha79 in reply to CAS2]

Thank u so much. I hope everything goes well for u and ur babies. Pls let me kno how it goes. I’ll be thinking of u on Tuesday and pray for ur babies to be ok. ❤️

[Shelleybean]

This brought tears to my eyes. How cruel after everything you’ve already been through with IVF. I don’t have any advice I’m afraid, but will be thinking of you xx

[CAS2]

Thank you. I always said IVF was such a roller coaster, and so it continues x

[CAS2]

I'll let you know how we get on xx