We had been married for five months before we were surprised with a twin pregnancy, we were ecstatic. At 16 weeks they were diagnosed with stage 2 twin-twin transfusion syndrome (TTTS). At 19 weeks we had emergency surgery in London to separate the twins.
We made our way home the next morning on strict bed rest. By day five, I felt different. My husband and parents were back at work, so I contacted our community midwife. She advised me to visit, and she would have a listen in for some reassurance. When I got there, she listened in on her doppler but then paused. She said she could hear something, but couldn’t be sure, so told me to get to the assessment unit as soon as possible. The drive there was horrendous as I was panicking the whole way. They took me straight through – these scans were becoming something of a routine now but this one felt different. Then the words came “I’m so sorry, but there is only one heartbeat. Can we call anybody for you?”. I felt it. Proper, gut-wrenching, silent heartbreak. I cried but the sound wouldn’t even come out. They guided me out of the office into a waiting room full of expectant mothers, and it hit me that I was still one, even though my baby had died. I still had one little one in there fighting away, but how could I focus on that when my baby had also just died?
The next couple of weeks were a blur of visiting the community midwife daily to check for my survivor’s heartbeat and staying with my parents. It was so hard to try and carry on as normal and to embrace my growing body, when I felt like I had lost a huge part of myself. I would keep being reminded “at least you still have one baby, at least you’re still pregnant”. But I took little comfort at the time – if it was singleton pregnancy, those words would never have been uttered, or the loss minimised. I now know that these words were always said in good faith and with loving intention, but at the time they stung. With a multiple pregnancy, the words ‘at least’ should NEVER be heard by grieving parents – a much wanted life is lost, end of. I couldn’t bear to do any baby prep, nor do any baby shopping, as to me it felt like my baby was gone. When I lost him, the doctor explained that after the surgery to save him, he had simply got too tired and stressed from the procedure – with that explanation, I had all but convinced myself that surely that would happen to his twin too, as they had both been through it.
A week later, at 23 weeks, I was admitted for reduced movements, and I was given a tour of the NICU. I hated that tour, as I did not want to accept that anything else would happen in this pregnancy, but it unfortunately became reality. On the eve of Mother’s Day, my mum and brother convinced me to get out of bed, so we visited a local town for lunch. As I sat down, I panicked – it felt like I was weeing. But the panic turned to horror as I stood up to see bright red blood. I ran to the bathroom sobbing and my brother followed, with my mum shouting for somebody to call for an ambulance. I sat down on the toilet and just felt the blood flood out. My darling brother held me tight as I resigned myself to the fact that my other baby was gone too.
An ambulance arrived and I was blue-lighted to the nearest hospital – I laid there waiting to die, and they wouldn’t let my mum sit in the back with me as they were ‘working’ on me throughout the journey. I was rushed straight into the unit and after a couple of minutes another gush came, so the emergency bell was pressed, and I ran into the theatre. I had an emergency C-Section, and my miracle son was born at 8.14pm, followed by my angel baby at 8.16pm. We were told the following morning that we were both minutes from death – me from bleeding out, and him from being suffocated in utero.
All of his cot cards read ‘Twin 1 of 2’, which led to 106 days of repeated reminders to new caregivers, that our baby’s twin was in heaven. It was relentless. Before we were allowed to see our very tiny, very sick baby boy, we were told that we had to ‘say goodbye’ to his twin. Still feeling out-of-it from morphine and adrenaline, I was wheeled round to the delivery suite, where he had been placed in a tiny wicker basket. To be honest I couldn’t comprehend anything – that he was really not going to live, that this was the only time I would get to see him, or that he was even mine. I didn’t even think to take photographs as I was scared that if we didn’t rush, we would miss seeing our other little one alive. Thankfully there was a volunteer on the ward who kindly took some instant snaps, however over time they have degraded badly. I regretted these moments for so very long, but now all I can do is forgive myself, as I never should have been put in that situation.
106 days felt like years, and each hurdle became a mountain; we will never forget on day 21, being asked to go to the relatives room to have ‘the chat’ – our tiny 2lb 1 bundle had viral meningitis and sepsis, caused by an infected cannula attempt. I felt almost disconnected from the situation, as I hadn’t even begun to deal with the loss of one of our babies, so another loss on top didn’t even seem that big of a deal. For the next seven days we held a 24/7 bedside vigil. He pulled through, and then he kept pulling through his other obstacles too – multiple blood transfusions, hernias, more sepsis spells, until we reached a point where home felt like a possibility on the horizon. I still refused to buy anything – in my daydreams I had imagined pushing my double pram and having two cribs set up either side of our marital bed – I just couldn’t face it. My absolute blessing of a mother came through and kitted us out with everything a baby could possibly want or need (and more). We were finally discharged at the end of June, and we finally felt like a family, although missing a very important member. We held his funeral two weeks after discharge, so that his twin could attend, and we had a small, simple affair at the local crematorium – the entire NICU stay was just focusing on bringing one baby home with a heartbeat, so we didn’t have a second of headspace to think or plan anything else. We bought a bunch of pink roses en-route, and we still have the buds in a Kilner jar to this day.
As time has gone on, we have adapted how we remember our precious boy. For the first few birthdays, we had two cakes, and we signed every card with both boys’ names, but this seemed to make others uncomfortable. As Charles got older, he had questions about the fact, and he found it really hard to understand, so now the birthday is always to celebrate him, and we mark the day of his twin passing with something special – a trip or meal out. At a recent family wedding, our angel boy was acknowledged in the groom’s speech, and we will be forever thankful that he wasn’t forgotten, just because his twin is here.
We think about him every day, but more so now with fondness. There are still lots of poignant moments, from ‘first day at school’ photos, to redecorating a bedroom for one instead of two. There are so many ‘what-ifs’? When he looks into the mirror, sometimes I imagine it is his twin looking back. For the first three years I was convinced our survivors heart would just stop like his brothers, but slowly my heart has started to patch itself up just a little – instead of a gaping hole, there is just a lifetime reservation for our darling Alfie boy.