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Termination for medical reasons - both twins

In 2019, I found out I was pregnant with identical twins. It was my first pregnancy and discovering we were expecting two babies brought a whole range of emotions- delight, shock, fear, and everything in between. We were mindful that twin pregnancies carry a higher risk of complications, but as the weeks went on we were perhaps naively expecting to bring two healthy babies home in the distant future. 

At my 12 week scan I lay on the bed with great anticipation as the sonographer ran the probe over my tummy. He was chatting away as he did it, commenting on the different measurements he was taking. Caught in my bubble of excitement, I didn’t notice when he went quiet. He excused himself to have a quick word with a colleague and my husband and I were left in silence. It was then that I realised something was wrong. 

The sonographer returned and told us that there was a significant disparity between some of the measurements between our babies. Instead of being sent home, we were directed to what I now refer to as ‘the sad room’. Holding back the tears, we sat clutching each others’ hands as a specialist midwife explained that the scan showed early signs of problems for our babies. We weren’t given much more information, but were told the results of our blood tests would provide more detail and so it was a waiting game.

When we got home we felt utterly blindsided. We’d expected to be sharing the exciting news with friends and family that we were expecting twins. But instead we had to sit and wait to find out what the future held. 

A couple of days later we received a phone call to tell us that the blood test looked positive; the risk to them wasn’t as high as they thought. Absolutely elated, we rushed to share our news with a few close friends and family. However, the very next day we received another phone call, asking us to come into the hospital to meet with the twin consultant. 

It was then that we learnt that the scans had actually shown that the twins already had early signs of Twin to Twin Transfusion Syndrome (TTTS) and Twin Anaemia Polycythemia Sequence (TAPS) and other complications. The consultant told us that she had never seen a case like ours in her whole career, and warned us that we had unique circumstances that meant that should the babies become poorly- which was very likely as they were already showing significant signs of this- they wouldn’t be able to carry out the usual interventions to try and save them. Our babies had a high chance of not surviving, or being born with severe disabilities if they did. 

We were absolutely devastated. We went home and scoured the internet for similar stories of this happening to other people, medical research on the topic, information on potential treatments- absolutely anything to try and find more information, a solution, any hint of hope. It felt like surely there must be a way to fix this, somehow. 

We’d been advised that our options were to just wait it out and see what happened, or terminate the pregnancy. However we were also told that we might be unable to terminate the pregnancy past 24 weeks, a legal cut-off that might apply to us if there wasn’t a clear-cut diagnosis. This deadline added so much stress to an already stressful situation, and so we insisted on a referral to a tertiary hospital to see a specialist. There, we were scanned again, and the same news was delivered. 

We were desperate to do what was best for our babies, even if that meant we didn’t get to stay with them. At 16 weeks we made the heartbreaking decision that we couldn’t take such a big risk for our babies. It was so difficult not having a definite diagnosis as we were constantly going back to the ‘but what if…?’. However we knew that if we took that risk for our babies and the worst did happen, they would both be facing very hard and potentially painful lives. We couldn’t do that to them, nor could we live with the guilt of knowing it was us who made that choice for them. 

As I was so far along in the pregnancy I was told I would have to have a medical termination. I had to go into the hospital to take a pill to end the pregnancy and then return 2 days later to be induced. I found taking the pill the worst part of it all- until that point everything had felt like a joint experience that both my husband and I were going through together. But ultimately only I could be the one to actually go through with it all, and talking about it is very different to actually doing it. It all became so heartbreakingly real. 

I wasn’t at all prepared for the birth and had presumed it would feel like a ‘bad period’ as you so often hear; I hadn’t realised I would be experiencing labour and birth. I was lucky to be able to stay in the hospital in a specially-designed room on the delivery suite for women experiencing loss and this really helped.  As I was still relatively early in the pregnancy my body wasn’t ready for labour yet, and so it took 7 rounds of the induction drug to get things started. It was a really long process and I found it quite painful. 

I’d taken a little blanket that I wanted my babies to be wrapped in- one of the few things I felt I could do for them now. I spent a couple of days in hospital after they were born to recover as I had also needed surgery following the birth. I chose to see them both and spent time with them. It was then that I learned they were girls. I had always dreamt of having a little girl.

I can’t describe the feeling of leaving the hospital with a memory box instead of my babies. Going home, seeing the door shut with them behind it and having to leave was the hardest thing I’ve ever had to do- the finality of it all. We just felt numb, exhausted, in shock. 

Only our close family and a few friends had even known I was pregnant, and so we grieved mostly in silence. Termination for medical reasons wasn’t really something you heard about and I felt a sense of guilt and shame surrounding it. I felt like my grief wasn’t valid, as it was me who had made that decision, however much I would have done anything for a different outcome. 

I found the support of the Facebook group and then the online support groups absolutely invaluable. I could be as anonymous as I chose, and over time I realised I was in a safe space and could share the details of my story more as time went on. There was no judgement here, only understanding, love and support. It was important for me to be able to share my story with others who have been through the same, or similar to me. I met other parents in the online groups and whatsapp groups who had also sadly lost babies due to TFMR. It was a huge comfort knowing I wasn’t the only one, and I was able to express all my complicated feelings with those who have been there too.

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