Louise’s story

I’ve been aware of baby loss awareness week for a number of years, but this year is different. This year I get it, in a way I never did before. 2023 is the year I became part of a community I never wanted to join, but it’s a community of the strongest, bravest, and most resilient people you will ever know. 

I never thought I would share my story.  At the beginning I never even thought I would share the details of our loss outside our closest circle, particularly the fact it was a Termination for Medical Reasons (TFMR).  Sharing something so personal and heartbreaking is scary and made even harder due to the fear of judgement that accompanies this specific type of baby loss.  However, I recently realised that hearing the stories of so many others, both in the TFMR community and the wider baby loss community, has helped me enormously this year and made me feel less alone. If sharing my story helps even just one person, in any way, it would be worth it.

We had been talking about starting a family for a while and in May 2022 we finally decided to start trying for our first child.  I knew a number of people who had experienced issues conceiving and those who had sadly experienced miscarriages, so I knew the journey to motherhood was not always an easy one.  Nevertheless, amongst the nerves, we were both thrilled and surprised when we fell pregnant quickly in August 2022.  The start of our pregnancy went smoothly.  Every week, with both excitement and anticipation, we would read the updates on the apps telling us how our baby was developing.  We were so delighted to see our baby at our first scan and it all suddenly started to feel very real.  Everything seemed too good to be true and I was anxious for the results of our combined screening tests.  We had never discussed what we would do if the results showed that we were high risk but we eventually received our letter showing that we were low risk and I breathed a big sigh of relief.  Like the majority of people we had waited to tell people about our pregnancy until we were out of the ‘danger zone’ so after the results, we started sharing our exciting news with all of our family and friends.  Our dreams were coming true and we started to make plans for our little one’s arrival, excited to start our lives as a family of three.

Our 20-week scan was on 22 December 2022.  I had read all of the leaflets on what the scan was checking for but naively I wasn’t expecting anything to be wrong for us. We were looking forward to seeing our baby again and to see how much they had grown.  Our scan started well and we had decided that we were going to keep our baby’s gender a surprise for the birth.  The sonographer said that our baby was laying in a difficult position so she couldn’t get all the pictures of our baby’s heart that she needed and she would come back to that at the end of the scan, by which time hopefully the baby would have moved around.  Looking back, naively, we thought nothing of this.  Everything else was looking fine, so the sonographer came back to scan our baby’s heart again and after a minute said “I can’t get a clear four chamber view, so I need to go and get a second opinion”.  At this point, we knew something was wrong and the tears started rolling down my cheeks.  From this point, everything became a blur but it was very clear that they knew something was wrong with our baby’s heart.

We were taken to one of ‘those rooms’, the first of many over the following weeks, and told that as there was only one more working day before Christmas they were going to try to get us an appointment with a cardiologist the following day and arrange a follow up appointment with the Fetal Medicine department between Christmas and New Year instead (normally the appointments are the other way around).  We were told very little by the hospital at that point, only to not google anything.  That night I couldn’t stop myself from reading my notes and found “ASD?’ written in them.  After a quick google I learnt that the sonographers suspected our baby had a hole in its heart – we prayed that if they were right that it could be fixed.

The next day, we made the 3-hour journey into London.  The festive buzz had taken hold in London and everyone was doing their last minute Christmas shopping.  Travelling through London we felt like we were in a different world to everyone else and something in the pit of my stomach told me that the day was not going to bring good news.  After two detailed scans, the cardiologist sat us down and broke the news that it was much worse than our hospital suspected and that our baby had multiple very serious heart defects; she drew a picture of what a heart should look like and what our baby’s heart did look like, told us that one of our baby’s heart defects in particular was commonly seen in babies with Down’s syndrome and explained our options with regards to terminating the pregnancy.  Any hope we had managed to find after our scan the day before disappeared and our world came crashing down around us.  Our baby would die within days of birth without intervention and major heart surgery soon after birth, the first of many major heart surgeries our baby would need to just survive. We left London in despair and our heads spinning.  We told no-one but our parents what was happening and with almost a week until our follow up appointment and everywhere shut for Christmas we decided to do our best to put everything out of our minds until after Christmas. 

In the weeks that followed we put on a good show of a couple enjoying the festive period but behind the scenes we were breaking; facing hospital appointments with Fetal Medicine, an amniocentesis to check for Down’s syndrome (which came back negative) and endless research into our baby’s heart defects and what they meant in terms of treatment options, chances of survival and quality of life.  Our baby’s heart was broken and in turn our hearts had broken too.

In January 2023, we made the devastating decision to terminate our pregnancy.  We knew we couldn’t continue with the pregnancy just because we wanted our baby to live; we had to do what was best for them.  In the end we came to the realisation that the only thing we couldn’t live with was watching our baby suffer knowing that we could have stopped it; we knew that we had to take on the pain so that our baby only ever knew love.

Our daughter Amelia was born sleeping on 12 January 2023.  She was beautiful in every way.  The darkness that filled the days and weeks that led to her birth is indescribable, but thanks to the amazing support of the midwives, our time in hospital with Amelia after her birth was simply full of love. As we prepared to leave hospital with a memory box rather than our daughter, our bereavement midwife shared two bits of advice that have helped me to this day.  Firstly, she told us to always be kind to each other; that we would grieve in different ways in the days, weeks, months and even years to come but that didn’t mean we weren’t hurting as much as the other.  Secondly, she warned us that we would present ourselves with a million different ‘what if’ scenarios and that we had to always remember that we made our decision on the information we had at the time and took on the suffering so that our daughter didn’t have to.

In the immediate aftermath of our loss, I didn’t know how we would survive it.  The loss was so huge and hit every aspect of our lives as our whole future imploded; it felt like we were drifting and all tethers had been cut.  Eight months on, the waves of grief continue to hit.  Some days they knock us over and other days we manage to stay standing.  As I look back on our loss journey so far, I’m still surprised by the things that we have had to deal with and how far we have come by taking the tiniest steps each day.  We know our loss journey will last a lifetime because grief is the price we pay for love, but we have started to feel hopeful again for the future.  The charities that work in the baby loss space are doing truly incredible work and we will always be grateful for the support we have received.

For those navigating through loss, you are not alone and I promise you that in time the darkness will start to lift. And for those trying to support someone else through a loss, you will never understand their pain unless you have been through it and that is okay, just be there for them.