It all started at 7 weeks pregnant. I had a big bleed and I was terrified, convinced I was having a miscarriage. An early scan was arranged for the next day and off my husband and I went steeling ourselves for the bad news. But, instead, we were told there was a heart beat… and another, it’s twins! We were shocked and immediately worried as I had been told, due to my bicornate uterus, that twins could be tricky. After many scans and a CVS test at St Georges (all came back OK, phew!), we were moved to a bigger local hospital with a NICU unit, as, due to our type of twins, they were likely to be born as early as 34 weeks. The months that followed involved various trips to St Georges and King College Hospital for different concerns and weekly scans to see how ‘Big Twin’ and ‘Little Twin’ – identical girls’ - were doing.
I eventually found the scans quite boring; they took a long time and I worried about how much work I was missing. The day came when it wasn’t at all an average scan – Little Twin was showing signs of Twin-to-twin transfusion syndrome (TTTS) and this could be life threatening to both twins. Off to St Goerges I went again that afternoon, worried but hopeful it would be yet more monitoring (although being told to pack a bag "just in case" was a bit concerning). Another wait for a late running scan. I knew from the doctors body language before I heard words you don’t really think you’ll ever hear “I’m sorry, there is no heart beat”. Little Twin had died between one hospital and the other. I was 26 weeks pregnant. Following an Intrauterine blood transfusion due to signs of anaemia in Big Twin the next day, a six week wait began to see how Big Twin has faired after Little Twin’s death and the blood transfusion. All the while I was planning for Big Twin’s arrival (I knew she’d be ok, she simply had to be and the risk was small) and making funeral arrangements for Little Twin.
An MRI was booked to check for the small chance of brain damage being caused to Big Twin by the drop in blood pressure when Little Twin died. Expecting a weeks wait for the results, seeing the familiar St agrorhes number flash up the next day made me want to vomit. They told me the results were ‘not entirely normal’. It was a Friday afternoon and no one would tell me anything over the phone. An anxious weekend passed and back to St George’s we went on the Monday to be told that Big Twin’s brain damage was extensive – half the left side of her brain has died, BUT, their brains have great elasticity - she might be ok – perhaps we’d face epilepsy, mild learning difficulties. TFMR was mentioned, which seemed a bit… over the top… from what they’d said. We went home thinking we’d be able to cope with all the possible diagnosis’ they’d mentioned. The next morning my consultant called first thing; “What exactly did they tell you?” she asked. I explained and she metaphorically sat me down and explained perhaps we’d misunderstood; Big twin was very unlikely to be unable to walk, talk, feed herself, maybe not see or hear. This was serious brain damage. We spoke at length that morning to several specialist who all agreed: Big Twin was very unlikely to have any quality of life. One of the things I was most looking forward to about our son having a sibling was them running around in the garden through the sprinkler in the summer, going on bike rides together, admiring each others Christmas presents – just as my sister and I had done growing up. I knew that Big Twin would never have this, she’d sit on the side lines always watching. And our son would face the burden of her care one day. We decided (is it really a decision?) to terminate the pregnancy. I was 33 weeks pregnant and the first time in my life I’ve truly sobbed.
After a flurry of phone calls to arrange various things, the next day it was back to St Georges for the injection that would stop Big Twin’s heart. They were running late and I was terrified that Big Twin would wake up and start wriggling about. The injection procedure itself was easily the worst few minutes of my life. I was sent home with condolences and kindness. I have no recollection of that evening, but I know I slept well for the first time in months, simply as there were no babies kicking me awake. The next day I was in for my C section – everyone was so kind and everyone was in tears, my midwife, my consultants. Then suddenly it was over. Both our girls born without a single cry. We chose not to see them, as I felt that I wouldn’t be able to cope with the immense guilt of having chosen to stop Big Twin’s heart – if I held her would I ever be able to let her go? We have photos that I look at often. I try to find comfort in them always being together, maybe they just weren’t supposed to be apart? We left the hosptial two days later looking up at the windows of the building we were leaving our babies behind in. You shouldn't leave a maternity until without your newborns.
We made the decision to TFMR to be the kindness parents we could – to both her and her brother, and to oursleves. Big twin knew only love and warmth before her TFMR and thats all I could really hope for.
The months that followed were hard, but two years on life has got bigger around the trauma of the deaths of the twins and I have many happy, easy days (and also some painky sad ones too). I think of our girls every day, and wonder who they would be. In another reality they're here with us, and I know they’re little firecrackers having a wonderful time causing mischief and making us a family of 5.
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