Heartbreaking decision to terminate for medical reasons (TFMR) during a global pandemic

Liberty and her partner were delighted when they found out they were pregnant - but sadly, their 12 week scan showed their baby was measuring small. A week later they found out their much longed for baby, Leo, had Edwards Syndrome (T18) and were faced with the heart-breaking decision to terminate their pregnancy for medical reasons, all in the midst of a global pandemic. This is Leo’s story.

We’d just moved into our first home in Hampshire and received our first ever positive pregnancy test. We were both so excited. Every week I’d write in my pregnancy journal and read through various apps to see just how fast baby was growing.

At 11 weeks I had a scan and was told my dates might be slightly wrong, as baby was a bit small, so I was told to come back the week after and get measured properly. 

Despite being on my own due to Covid-19 restrictions, I was relieved and excited. As the sonographer didn’t seem to indicate that anything was out of the ordinary, I started telling most of my friends and family. As far as I was concerned, I could see a heartbeat and see baby moving around on the screen.

Problems at my 12 week scan 

A week later, at my 12 week scan, the sonographer took me through baby’s hands, feet, heart and stomach. I instantly fell more in love.

It was at this point, as I was staring at the screen imagining our future with our baby that the sonographer said: “I’m so sorry. Baby’s measurements aren’t quite right.” My husband was called in and they started talking about NT measurements and possible chromosomal issues.

I couldn’t comprehend how such a perfect moment had ended so quickly.

We were moved from the ultrasound room into an office and given leaflets, tissues, and 5 minutes alone to digest the news. After more ultrasounds and tests, a week later it was confirmed that our little baby was a boy – and that he had Edwards Syndrome (T18).

We were told over the phone that this meant that he was ‘incompatible with life’ and probably wouldn’t live past his first birthday. After hours online trying to decide what was best for me and baby - a D&C or a termination for medical reasons (TFMR) - we made the most difficult decision to go ahead with a termination.  

The only way we could decide was by asking which option I could be booked in for quicker, to try and end the nightmare as soon as possible. In hindsight, I wish I’d taken more time to process everything and keep our son alive longer.

Terminating a baby during a global pandemic

Trying to get my husband into any of the scans was so difficult, even though the midwife had said he was allowed due to the nature of our pregnancy. At every appointment, we had to tell them that our baby had chromosomal issues and that we had been told my husband could attend. Having to repeat this over and over again was heart-breaking each time.

The morning of my termination, we had our bags packed for me to give birth, 6 months sooner than we thought we would need to pack them; it didn’t feel right that we had things in there for us but nothing for our little baby boy.

The nurses on the ward took me in but told me it was unlikely my husband would be allowed with me and we went through the same process above all over again. Luckily, after 5 minutes of me sitting in the room alone worrying I would have to do this alone, my husband was able to come in.

20 hours in labour and 4 pessaries later, our baby Leo arrived. His little lips and nose were the most perfect thing I have ever seen. I was mentally and physically drained, and whilst I hated leaving him there on his own, I just wanted to rush home so that I could lock myself away from the world.

Supporting a friend who has gone through loss

The first night out of hospital I cried myself to sleep. Nothing can explain the pain of leaving your baby at hospital and knowing you’ll never get to see them again.

Trying to navigate loss and these new feelings is hard. I think of little Leo every single day; he is and always will be my first born. Whilst the pain will always be there, talking about Leo and my loss is helping me cope and move in a positive direction in my grief journey.

I find myself trying to explain to my friends how to be there for me whilst trying to make sense of it all myself. If I could teach anyone how to support a friend who is dealing with baby loss, I’d say: - 

  • Ask a grieving mamma if they’re ready to talk about their angel baby: Personally, I wanted to talk about Leo and my experience giving birth to him. I found it therapeutic as otherwise it almost didn’t seem real. Don’t just ignore our babies, they are all we can think about. Please continue to say their names.
  • We need you: No matter how much we say we don’t want to see anyone, we need you. Whether that be coming round for a coffee, picking up the phone or getting us out of the house.
  • Be mindful of how pregnancy news will affect a grieving mamma: We’ve just lost our own baby and whilst we’ll be happy for you in time, we currently may not have space if we are consumed by our grief.
  • Be mindful of what you put on social media: Baby social media announcements can trigger grieving mamas into remembering things that happened to them. Again, we’re not sad or angry because your baby is still well and you’re able to post your positive experience, but we are empty, and we miss our babies. Your posts remind us of the fact we will never see our babies again and the terrible grief we experienced when we lost them.
  • Gifts that help us validate our grief: My favourite gifts I received were a candle with Leo’s birth date and name engraved, and a painting of a dragonfly my friend did for his funeral to go in his coffin. Gifts like this validate our grief, remind us people are thinking of us, and acknowledge our baby as real.

Termination for medical reasons

Tommy’s including TFMR as part of the conversation when speaking about baby loss is such positive news. I knew there was a risk of miscarriage in pregnancy but honestly didn’t know that women sometimes have to make the decision to have a termination for a baby they very much want.

After my TFMR I felt like a bit of a fraud reaching out to baby loss charities, as I hadn’t experienced a miscarriage - like I had chosen my decision and it was my fault.

The Tommy’s website helped me research before having Leo, so that I knew some questions to ask the midwives and what contact I would have with Leo once he was born. It also helped me find a counsellor, giving me someone to talk to and someone to help me process what has happened.

I hope Leo’s story will help others realise they’re not alone. Whilst it is a painful experience, our babies existed and will be remembered by us every day. 

As I write this, I’m currently going through a miscarriage of our second baby. I know how important it is for me to use Tommy’s to try and find the information, help and support that I need, whilst keeping the hope that one day I will have our rainbow baby in my arms.

You can follow Liberty's journey on Instagram