The outcome of the appointment turned our world upside down

In August 2022, myself & my husband couldn’t believe our luck to find out after years of infertility struggles & a failed round of IVF that our 2nd round of IVF had been a success and we were having twins.

Our girls were monochorionic twins. This meant they shared a placenta & were at risk of Twin to twin transfusion syndrome (TTTS). Due to this, I had to have an ultrasound every 2 weeks. I spent the majority of my first & second trimester on high alert for TTTS, a common complication of Monochorionic twins. TTTS is uneven blood flow between the twins and if caught early & in its early stages it can be treated by surgery.

Approaching 29 weeks pregnant, I had just started to allow myself to relax.

We bought the cots, moses baskets, a double pram, 2 car seats…. but it wasn’t to be.

My pregnancy had been fairly textbook for the majority of it. The girls were measuring small but there were no other causes for concern.

At my bi weekly 29 week scan, there were signs of TTTS – vast differences between the girls’ amniotic fluid levels, more than a 25% size difference and abnormalities with blood flow through the umbilical cord. I was immediately referred to the MFM team at St George’s London.

I was preparing myself for the fact that I would be delivering the girls very early as I was told by my local hospital that 29 weeks was too far along for TTTS surgery.

But the outcome of that appointment turned our world upside down.

In the space of 2 weeks we had gone from all ok to acute stage 4 TTTS. Stage 5 is when one or both babies pass away & the sudden shunt of blood flow can be catastrophic for the other twin.

That day we made the heartbreaking decision to opt for selective reduction or TFMR as it is also known.

At that point our daughter Poppy was in heart failure. She had swelling under the skin. Fluid on the heart, lungs & brain.

We were told we could deliver both babies but the only option for Poppy was palliative care.

Our surviving twin Phoebe was also very poorly & very small (estimated 1lb 3oz) so there were no guarantees she would survive either.

If by some miracle Poppy had survived, they could see she had suffered significant brain damage. This crossed a red line for us in terms of her potential quality of life- if she was to survive ( which was highly unlikely)

There are details of that day I just can’t look back on. The surgery itself is one I have only very vague memories of.

During the surgery Phoebe’s heart rate began to plummet & suddenly a whole other team of people from the NICU appeared. Thankfully they were able to get her heart rate to normalise, but they later told us they were 1 minute away from getting Phoebe out.

I like to think that it was Poppy sending Phoebe back to us ❤️

Only our very close circle of family know about the selective reduction. As far as anyone else is concerned, Poppy died as a result of TTTS- which is true but I have always been wary of sharing the fact this was due to TFMR. There is a very real fear of judgement and feeling of shame that comes with TFMR.

I came across Footprints baby loss, who offer support for bereaved families of twins and triplets. It’s been so comforting to find others that have been in our situation- where we can share our experience without the fear of being judged. 

What I have learnt to tell myself is that TFMR only comes from a place of unconditional love & wanting to do anything in our power to lessen your babies pain and suffering & It’s certainly not something to feel ashamed of.