Breaking the taboo on miscarriage, neonatal death and termination for medical reasons

After their new-born daughter Florence passed away, Ella and her husband Ryan desperately wanted a sibling for her. When the couple fell pregnant again, they learned the rare genetic problem that led to Florence’s death would affect this baby too, and made the heart-breaking decision to have a termination for medical reasons. In this blog, Ella reflects on the lessons learned from loss.

Last year I was 26, working as a nurse and living in Bristol with the wonderful man I would later marry, when my life dream came true; on 30 September, our beautiful and utterly perfect daughter Florence was born. I felt euphoric, like I could conquer the world with her by my side. She was our sunshine and brought so much happiness. 

Saying goodbye to your newborn baby

The following day we had that magical moment of taking her home - but unfortunately, she couldn’t stay long, and we ended up back in hospital. Florence sadly passed away in her Daddy’s arms on 3 October 2019.

That was the moment our whole world crashed, and life changed forever. 

We later discovered that Florence had a rare disorder, affecting just 1 in 100,000 babies, triggered by a gene that Ryan and I didn’t even know we carried. The risk of both parents passing on the gene and therefore having a poorly child like Florence is 25%, so our future pregnancies had a 75% chance of a healthy baby.

Trying again and pregnancy after loss

With the odds in our favour and hope inside, we decided to keep trying. When we lost Florence, we so desperately wanted a sibling of hers, to feel close to her and to feel that happiness again. Since losing her, life has been hard. To be honest, most days, just surviving is a struggle. She was my purpose. 

We have so much love to give but nowhere for it to go.

On 1 May 2020, we found out we were pregnant again, and booked tests to find out if the pregnancy was affected by the gene or not. At 12 weeks I went in for Chorionic villus sampling (CVS), where a doctor puts a needle through your tummy and takes a bit of the placenta to check for various health conditions. Unfortunately, this didn’t work, so we had to wait another month for an amniocentesis. That went well, and I was put on bed rest to reduce the risk of miscarriage.

For 10 days, we waited for the phone to ring; it was torture, so much relied on those results. I’m not religious but I prayed so much, wished on 11.11 every day, saluted every magpie I saw, you name it and I did it! We were sat in the living room when I got the call and heard those harrowing words: 'I'm so sorry Ella, it’s not good news, the baby is affected'.

Going through it all again

The rest all seems like a bit of a blur. I had thought it would be okay - the pregnancy was going well, I felt much better this time round, we had already lost Florence, how could we possibly be losing this one too? This was our little glimmer of light and hope amongst our world of darkness and sadness. 

3 days later, I went into hospital to take 'the tablet', the one which ends the baby’s life. Apart from losing my daughter, this was the hardest most heart-breaking thing I’ve ever had to do. I was made to be a mum, all I want is a child, and there I was ending its life. Whilst I felt it wriggling inside of me, I swallowed the tablet, and I could almost feel it die instantly.

Ryan, being the best and most supportive husband ever, consoled me as he does. After 2 days at home, trying to come to terms with everything, we were back in that room to be induced. I was terrified of going through labour with such a sad thing to come out at the end of it. 7 hours later, without any pain relief, I delivered the little one at 18 weeks and went home the same day.

In just a year, I have delivered 2 babies and left hospital twice with empty arms. Currently I should be 26 weeks pregnant and have a 1 year old; oh, how I wish that was my life. 

Termination for medical reasons (TFMR) is utterly heart-breaking. We lost our chance of feeling happiness again. The baby couldn’t have been more wanted - not just by us, our family and friends too - but we must remember that when Florence died, she gave us the knowledge and privilege to be able to save her siblings from a future which no-one would ever wish upon their child.  

Hoping, dreaming and moving forward

Now we’re trying to re-discover the hope we once had and imagine a happier future. Hopefully one day, the nursery door will be re-opened, and we will get our baby to keep. They will know all about their siblings and how special they are. Needless to say, that baby will be one of the most precious little people to ever grace this earth.

Miscarriage, neonatal death and TFMR are such taboo subjects. Life can often feel lonely. There is a fear of judgment and often a feeling of guilt. As someone who has experienced all 3, sharing our story has been part of the healing process, and the support we’ve got in response has helped so much. I’d encourage anyone going through baby loss to speak up, raise awareness, and know there are charities out there such as Tommy’s, ARC and Petals offering support.