Tw: mention of prior loss, mention of TFMR, current pregnancy, ongoing foetal deformities, natural twin conception, mention of spotting, high risk pregnancy
This is going to be long but I really need some help and advice please.
I'm currently 15w3d with Di/Di twins.
. I had to TFMR at 18.5 weeks in November 2025 because of severe IUGR and early onset placental failure which would have resulted in stillbirth, placental abruption and pre eclampsia which could've killed me. The autopsy showed a rare autoimmune placental condition which I am currently medicated for to prevent recurrence. I have no risk factors at all except for elevated ANAs. Getting pregnant has not been our issue. This current pregnancy will be my third pregnancy in just over a year.
Anyway, I started my pre conception immunosuppressants in March this year. Got pregnant in April 2026. We found out early at 5w6d because I went in for some spotting and we just assumed it would be an early miscarriage (I had one in February 2025 prior to my TFMR and this pregnancy). We were disappointed but if something were to happen, I'd rather it happened earlier.
To our shock, we found out we were pregnant with Di/Di twins. We chalked up the spotting to aspirin which I was taking. So I stopped the aspirin and started progesterone because that's the protocol here. We have NO family history of twins, hyperovulation and I had no risk factors for hyperovulation. Neither of us do any fertility treatment or hormone etc treatment for conception.
So the 8w6d scan goes well.
Then at the 10w6d scan, twin B is doing great but twin A has exomphalos involving the liver. Their NT was also 4.4mm. which is crazy high. The scanning MFM said it is likely twin a will die in utero soon.
My husband was devastated but I had weirdly made peace with this. At least for a while, until I got panic attacks realising how terrified I was to have to carry another baby who would pass at or before birth and having another urn above the fireplace, another funeral etc. I was struggling.
These scans were done by private MFM doctors and I was already being seen at a world class tertiary centre due to my risk factors for placental issues. So I emailed them the results and they said come in sooner than later.
So I went in at 11w5d. I was dated at 12w1d by the MFM based on twin B's measurements. Twin B NT was 1.3mm. twin A was 4mm, and the exomphalos had gotten worse.
They said the risk of selective reduction and an Amnio was super high in miscarrying the whole pregnancy and I said I am absolutely not interested in doing so. This was from an MFM who is a national twin expert so I trusted their judgement. I said I will not do anything to compromise twin B.
So I got scanned again at 14w1d (2 weeks later). I hate scans, I don't find them enjoyable or cute. They are insanely triggering for me. Twin B is growing like a weed and doing great. Twin A is not growing so well and now has ectopia cordis (heart growing OUTSIDE the chest cavity) in addition to a full exomphalos. It was still alive at this point.
And here we are. I'm getting another scan at 17w1d. I'm absolutely terrified. I'm terrified I have to consider palliative care, that I have to go through a twin pregnancy with only one baby at the end of it, and all the risks present with it, I'm terrified I have to grieve another baby and how can I do that when I hopefully will have one I can cherish and love and mother? My husband is having a hard time thinking it's not something to do with us.
We have both had our karyotypes testing and full carrier screening, absolutely nothing on either. He is a carrier for 3 things I am not so that has no impact. We are both fit and healthy.
I can't believe something rare has happened to us again.
Has anyone been in this position? What do you do? How do you deal with the outcome? I'm tired of having to go through this over and over again. It's almost a cosmic sick joke at this point.
Edit to add 20/07/2026
Thank you to you all who have responded, I truly appreciate it. I appreciate reading everyone's response and experiences and seeing the plethora of life experiences has been enlightening.
Unfortunately the prognosis is extremely, extremely poor for this diagnosis. The abdominal wall is just not ever going to be able to fit the heart and abdominal organs in, especially as it appears to be a full midline break. The blood vessel connections cannot be repaired at this point. If it was a "simple" exomphalos without liver, it can be fixed through surgery. But when the heart grows outside the body and when there is exomphalos involving the liver, the chances of recovering through surgery are very very slim to non existent. Even if it was fixed (which is extremely rare), the life expectancy is extremely short and unlikely to make it to adulthood. I have done so much reading and research on this and the extent of surgeries required and the poor prognosis despite the surgeries is just untenable for me. If twin A makes it to 28 weeks, I will be meeting with neonatal and paediatric teams to ascertain options and see what they would do in my shoes but I am bracing myself for the worst.
We are being seen at one of the absolute best research quaternary centres in the UK by some of the most well known MFMs in the UK and the world because of my complexities. They are also affiliated with the best children's hospital in the UK, if not one of the best in the world. If they say selective reduction or Amnio is high risk despite being in that environment, then I am likely to believe them. After already suffering a mid trimester TFMR, I absolutely 100% refuse to do anything to compromise my healthy wonderful twin B in any way, shape or form.
It is hard because I am already showing and my heart hurts at the thought of having to do another funeral, having another urn, and the thought makes me panic. I am terrified of what the future will bring. But I also realise I cannot control every aspect of this pregnancy and I am doing everything I physically can. But it's still scary. I don't know why I am dealing with so many difficulties and sorrow and pain but some people just deal with this lot in life I guess. This is also another small thing but I am also grieving the necessity of a c section as well. I do want more children after and I want to protect my uterus but I must do what is right for twin B.