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TFMR - Termination for Occipital Encephalocele, donor egg IVF and no longer TTC after TFMR

At 13.5 weeks, after another scan, we did an announcement to family and friends and while not getting ahead of ourselves, we were starting to believe we might have a little person in our home....

We started down the trying to get pregnant route at 40yrs(me) & 44(him). Got pregnant the first time, then heard the awful ‘I am so sorry there is no heartbeat’...

All our naivety vanished at that point! We had been so excited and grateful. We realised getting pregnant was only the start and definitely not a guarantee of anything else.

After some time of limbo, not really trying, but still talking about a family we decided at now 42 and 46 we needed information, we went straight to a fertility clinic so we could make an informed decision about where we were at. Turned out I had no eggs but his sperm were good and so we went straight to egg donation to give us the best chance. All moving in the right direction. We had 4 high quality embryos.

Out of the 4 transfers we had, the first didn’t take, the second did and at the 7 week scan we heard the heartbeat and I felt like I let out the breath I had been holding. Unfortunately I ended up in the emergency room that night miscarrying.. we thought this was the cruelest thing to happen to us, not even one night to be in our happy bubble!

After this I was incredibly lucky to have been in contact with a bereavement midwife who was my go to and the pregnancy loss clinic who went above and beyond to give me all the tests they could to have the best chance for the last 2 cycles.

Covid then hit and we had a forced break and I am not even going into all the D&C procedures and delays, trying to stick to the headlines here. In March 2021 we did our third transfer and we were so happy it stuck! Because of the amazing bereavement midwife I was getting fortnightly scans from 7 weeks and they kept me sane! At 13.5 weeks after another scan we did an announcement to family and friends and while not getting ahead of ourselves we were starting to believe we might have a little person in our home. We had so much reassurance at that point.

The 2 week scan at 15.5 weeks changed everything- all I had focused on was a heartbeat and movements on the scan, this time we were told that ‘there are unusual cranial features’. We were just shocked, the amazing bereavement midwife from earlier jumped into action and the following day (Friday of a bank holiday weekend !) we were seen by a Fetal medicine specialist who confirmed a worse case scenario for us, the baby had Occipital Encephalocele. Part of their brain was in a sac at the back of their head, how much brain matter would determine how serious it was.

A week later and lots of additional tests, test results (no genetic / chromosomal issues were found ) we were told it was really bad scenario - Our baby if they survived to birth would be profoundly disabled, require brain surgery to put their brain back in their head, suffer strokes, hydrocephalus, muscle spasms, the list was actually endless and probably not come home.

We live in Ireland - terminations are incredibly controlled and difficult to get and our baby’s condition was not on the list for a medical termination although the medical team did try to support us. We also knew by 20 weeks we would have no choices for any of us.

So in the middle of Covid, we travelled to London to end the pregnancy on June 25th. It was the right decision for us all. We were so united in the decision and our heartbreak. Like all of us I think it’s the hardest thing to do to end something you want so much.

I was the oldest lady in the clinic, I was so sad, trying to be strong enough to walk into that room, grateful they would knock me out, devastated that this was happening to us!

We came home and put ourselves back together AGAIN !! I found TFMR Mamas, cried, laughed, and we even went on holiday to have a change of scene.

We had one embryo left and it took some back and forth to decide what to do. We had created them, I had gotten pregnant and was collecting doctors each time to look after me!

Timing in life is so strange sometimes, as I am typing this out today, I am 2 days off my tfmr baby’s due date. I am crampy and bleeding as I have have come off all the IVF support meds 5 days ago as our last embryo transfer didn’t take, the whole journey is ending at the exact time I had hoped to bring my baby home..

We are incredibly lucky as this journey has brought us closer as a couple and my favourite part of it was when we were the only ones who knew what was going on.. my husband is a kind man and he is still my favourite person in the whole world.. we are a family and with this chapter ending we will never regret trying and wonder what would have been.

I am grateful that we live somewhere we had access to fertility treatments and they gave us a chance and to the woman who gave us her eggs. However, we are not doing this again though, because we are not naive anymore !

Michelle - TFMR Mama


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