The Isolation of Loss: Becoming That Statistic More Than Once
Everything started for us back in January 2018, we decided in the December we’d start trying & found ourselves pregnant after the first month.
I remember being upset but I’d heard miscarriage was common, 1 in 4 & thought that was just our 1.
It was only about a week after finding out that we were pregnant that I started cramping & within 24 hours was miscarrying.It was a bit of a blur at the time, we hadn’t really gotten our heads around being pregnant & what that meant before it was over. I remember being upset but I’d heard miscarriage was common, 1 in 4 & thought that was just our 1.
We got pregnant again a few months later & happily brought our little boy, Theo into the world following a relatively straightforward pregnancy. Just over a year later we decided to try for number 2, we fell pregnant within a couple of months in the first Covid lockdown. I was sick, all the usual first trimester symptoms, we got past that 6-week mark & naively the prior miscarriage was a forgotten blip.
I was just over 10 weeks pregnant & despite not being far from our 12-week scan, I decided to buy my husband a private scan for his birthday, it was the middle of Covid so it seemed like something that would make the day memorable. I lay on the table wondering if I’d managed to fill my bladder enough as I felt so sick I wasn’t drinking much, we were just chatting away as the sonographer put the scan up. I don’t remember exactly how things went after that but I do remember almost feeling like I was being told off, why had I not realised something was wrong, I must have got my dates wrong because the foetus was only 8ish weeks in size. A total lack of compassion & sign posting to an EPU. We were devastated.
We opted for a medical procedure following that. It took a lot longer for me to pass the baby than expected, a few days after the medicine I had these intense cramps and ran to the bathroom, before I could get to the toilet, what I now realised was the baby literally fell out of me on to the floor, the size of a big tampon there on the floor. I stared at it not knowing what to do, then picked it up and flushed it down the loo. No one prepares you for that.
Now we were 1 in 20-100 having a missed miscarriage. Following that we had 2 further early losses at 6-7 weeks. It was the darkest time in my life, we withdrew, it wasn’t hard, we were still in Covid so we could avoid people. We struggled to get any help with the NHS because we already had a child. I just had some blood tests & an ultrasound, when they didn’t find anything (after a possible cancer scare that turned out to be a highly incompetent doctor) we were discharged. I remember asking can I access any mental health support given what we’ve been through & was told there are long waiting lists you should just try going private.
The one thing that has remained true throughout our story is the complete lack of support available to families in these situations. I’ve got to the stage where I think I’m crazy for expecting more. After 4 miscarriages we were now 1 in 100, ticking the recurrent miscarriage box too. We ended up seeing a private doctor who was so brilliant, we are very fortunate that we were able to afford her support & I truly believe we have our 2nd son, William, because of her brilliance. She prescribed us with progesterone pessaries that I have taken in all my subsequent pregnancies and I’ve not miscarried again. I have a feeling that so many women would benefit from this intervention & not have to go through all this pain but it’s not always accessible on the NHS which is devastating. With William, again our pregnancy was relatively straight forwards, we were blessed.
That brings us to last year, it took us a long time to decide whether to try for a 3rd but in March 2024 we made the decision & got pregnant that first month of trying. It all felt too easy, how could this be? I was 38 now, we had so much loss before, surely, we weren’t just going to have another baby because we wanted it. I don’t know why I had that underlying feeling but we had scans at 7 weeks, 10 weeks, 12 weeks, my cervix was checked at 16 weeks & I saw our baby moving around, we were in the safe zone we thought as all our other losses had been before 11 weeks. At 18 weeks I expected to start to feel movement, I knew I had around that point with the boys. It didn’t come, I tried not to freak out, I knew I could have an anterior placenta or maybe my memory was a bit off but by 19 weeks I was preoccupied with the thought that I had a dead baby inside me. We were on holiday in Portugal at the time but the minute we got home I went to pregnancy unit & they listened in. To my disbelief they found a heartbeat & told me “That sounds like a happy healthy baby, you probably have got an anterior placenta, don’t worry, your 20-week scan is only a week away”. My husband wanted to see the baby regardless so we booked a private scan the next day to find out the baby’s sex with the boys as they wouldn’t be able to come to the NHS scan. It was a little girl!
When we left, I looked at the papers, she was <1st percentile on some measurements. That’s when our world started to fall apart.
After the scan the sonographer pulled me aside & asked if the boys had been very small babies. I said not abnormally small; Theo had been 5th percentile but William bigger. She said she wanted to share the results with the midwife as she was concerned. When we left, I looked at the papers, she was <1st percentile on some measurements. That’s when our world started to fall apart.
The NHS would not see us before our scheduled 20-week scan 5 days later. We sat in that waiting room with these happy round bellied women for what felt like forever. I was shaking & crying on the bed as she took the scan, and she said “I agree with the private scan but also the baby’s thorax is the wrong shape. You need to go to foetal medicine.”
We were taken to a private waiting room & ushered out the back door. It took a couple of days to get in to foetal medicine, during this time we had no idea what was going on, what range of outcomes we were looking at from survival & everything is ok to losing the baby. It was a total head f***. Meanwhile trying to pretend to the boys like we were ok & not knowing what to tell them as they grew more excited about having a baby sister. I was so scared to tell the boys, but surprisingly that was one of the easier parts about the whole ordeal.
The foetal medicine appointment was horrendous, we were scanned for over an hour, we didn’t look at the screen, we couldn’t. Eventually they took us into a room & told us what they thought was wrong with our little girl. I can so vividly see the doctor saying to me, “many people would choose to terminate based on these results”. I can see her face, the room, hear those words. The worst moment of my life.
We decided we wanted more certainty so had the amniocentesis the same day & went home. To say that we then felt abandoned at this point is the only way I can describe the next 3 and a bit weeks. I trapped myself inside not wanting anyone to see me & work out I was pregnant, for me to have to tell them I was but things weren’t looking good. We had next to no correspondence from the NHS with the exception of the geneticist calling to explain the tests, then to say she didn’t have Downs’ Syndrome or any of the other more common disorders. We were basically told to contact the midwives when we decided what we were doing- i.e. terminating or looking for palliative care at birth. After 3 weeks & no results we asked for another scan, who knew, perhaps there had been a miracle. The evening before the scan we did get a call from the genetics lab to tell us that the gene they had suspected was fine but they would keep looking for something else. As much as I wanted to suppress it, I had a shred of hope. That was all shattered the next day when the scan revealed she was still tracking very small & it was clear to the doctor she had a form of skeletal issue they just hadn’t pinpointed it yet. Sure enough, we got the call later that day to say they had found the gene & that alongside the scan suggested that the severity of the issue was not compatible with life. I didn’t know it was possible to cry that much.
I had to sign to say, yes you can kill my baby. No one should ever have to do that.
We made the decision that it was in her best interest not to put her through the birth for her to die during or shortly after and that we would go ahead with the termination. A few days later we were booked in. By this point I was over 24 weeks so we would have to have a foeticide, I had to sign to say, yes you can kill my baby. No one should ever have to do that.
2 days later we gave birth to our tiny Georgie. I was so thankful to TWGGEF for the podcasts from others that had been through TFMR. It meant that we did a few personal things such as buying her a little Teddy & taking her a book that we’d read to the boys to read to her etc. and accessed guidance I wasn’t able to find anywhere else nor did the bereavement midwife suggest.
We were a bit scared; how would she look? She was so beautiful & just fit in my hands. The midwife that helped us that day was the most incredible, compassionate woman, thank you Jane for making that day as easy as possible & for really caring for our little girl. I’m crying as I write this.
I’ve had so much anger in my grief, primarily at the lack of emotional or mental health support that has been on offer to us. Apparently, I have been coping too well to access maternal mental health support & numerous charities have either not replied to me or been inaccessible due to the post code of the hospital where Georgie was delivered.
And there we are, one of the 5,000 couples that have a TFMR each year in the UK. There are no statistics for the likelihood of a baby having the gene defect that Georgie had, we’ve finally broken the stats!
I could say so much more but I think I’ve run out of room. Thank you Bex & Laura for all that you are doing to help have our stories heard & improve the care and compassion that women & their families so desperately need. You are incredible. With lots of love x
