Remi’s story

We lost our beautiful girl in April 2026. I had only just turned 24 and had married my husband at the end of March. Little did we know, a while after, the next isle we walked down was laying our precious girl to rest. 

We weren’t prepared at all for the news we received at our 12-week scan. As someone who’s had ongoing endometriosis concerns, we went into this pregnancy worried about whether I would be able to manage. But I did – I made it to 12 weeks, and we were completely over the moon. I had an NHS scan at 11 weeks due to some severe sickness, and all was okay, so we let ourselves get excited and started sharing the good news.

When we then went in for our 12-week scan and we were told “I’m sorry but there’s a significant finding with your baby” my whole world collapsed. I thought I was suffocating and kept telling myself she must be wrong; everything was okay just a week ago. She explained there was a lot of fluid around our baby’s neck which put them in the high-risk category for Down’s, Edwards’ and Patau’s syndrome. We were then put in a white room and all I remember is telling my husband how I didn’t know how I was going to get through this and the specialist midwife giving us our options. 

I had the normal screening tests done and little one came back 1 in 3 chance of having Edwards’ and Patau’s and 1 in 19 for Down’s syndrome. 

I spent the whole weekend in fear – I dreaded but also couldn’t wish our next appointment to come soon enough. I wanted to know what was going on, but I was terrified at the same time. The appointments only deteriorated, we were seen by specialists and fetal medicine experts who all gave us the worst news anyone could receive. “Your baby is very poorly and won’t survive past 16 weeks”. Not only was there an abnormal amount of fluid behind baby’s neck, but there was also fluid in her lungs, brain and belly and she had only developed half a heart. The scan also showed she was measuring a lot smaller than what she should have been and there were various structural abnormalities. 

It was at that point we were told we had to make a choice – to continue or to not continue. We were advised that our baby’s heart would most likely stop in the coming hours after our last specialist appointment due to how much fluid was building up. 

I had opted for CVS testing at the time but due to where my placenta was, they were unable to do the test. Instead, I had a NIPT test, which came back negative for all conditions. This was heartbreaking because everything was pointing towards Edwards’, and this is what we had to base our decision on. My husband and mum stayed with me for every appointment and held me through every tear. I wasn’t living through these appointments, none of us where, we were simply just surviving. 

When we decided we had to let our baby go, I was faced with the option of a D&C (surgical termination) or natural labour. Due to having a bleeding disorder, I would have had to have waited a further week or two for a D&C and would have had to travel to London to have this done. We agreed to allow my body to go into labour, so we could have some time with Remi and let ourselves grieve. I was so scared of this; how do you start to process going into birth knowing you’d be leaving the hospital with no baby? 

The lead up to this was agonising, and I ended up being admitted to hospital early due to extreme sickness and other side effects. I was put in a labour room which was specifically designed for parents giving birth to sleeping babies. A part of me didn’t want to be in that room as nice as it was, because it was a constant reminder that my baby wasn’t going to take their first breath. 

I ended up giving birth to my baby girl at just over 14 weeks. She was born on the 29th of April at 3pm. Out of all the appointments, giving birth wasn’t the worst – because I got to hold her, say goodbye and I got to tell her how much I loved her. This day is a day where every moment, every second is as clear as day in my mind.

Leaving the hospital was the worst – leaving with just a small bereavement box and a blanket our Remi had been wrapped in. We went weeks without knowing what her diagnosis actually was, but then it was confirmed through testing she had Turner syndrome. This is how we discovered she was our little girl, which brought comfort and upset all at the same time. She was also diagnosed with hypo-plastic left heart syndrome, and her chances of surviving were extremely low. 

We had a funeral for Remi, which me and my husband helped organise and we laid her to rest just the two of us. It was so hard to think that just a month and a bit before she was in my belly at our wedding day, but now we had to say goodbye. I still hadn’t processed and neither had my husband until we walked her down the aisle and let her go. This was an incredibly hard day, but we took peace in knowing it wouldn’t be long before she was back home with us. We now have Remi’s ashes in a beautiful bear, which allows for cuddles and means she comes everywhere with us. 

I try every day to be strong for my Remi, but a part of me died with her that day. She was my first born, my first daughter, and nothing will ever take that away from us. Every day I wish I could change what happened, and as her mum, I will always wish I could have given her a chance at life she deserved. She will always be remembered, always be loved, and will always be a part of our family. 

Baby loss grief is something so hard to navigate and sometimes you feel so alone, even though you know you have support around you. I hold so much guilt that I couldn’t protect Remi, but I know deep down she’s in a safer place and we did what we had to do to stop any further suffering. Nothing will ever make this situation okay, but all I can do now is try and make her proud and incorporate her into our lives no matter what we do and where we end up.