#DiversityInLoss – I find it too painful to bare my broken heart to people

I am often guilty of viewing the baby loss community through the eyes that social media gives us. Yet, its important to remember that not everyone who has lost a baby is talking openly on social media, or even engaging at all – for many different reasons. That is totally okay. By the very nature, we rarely hear their stories and voices. In this post, Marie tells us about her five babies and their challenges with recurrent loss.

Please welcome Marie, Bertie, Rupert and her other babies to the Diversity in Loss series..

How do you put into words everything we have been through? Words don’t seem to really explain the highs and lows, the depths of love and grief we have experienced. This is my attempt to explain it all.

Over the last six years of trying to bring a baby home my husband, Dorian, and I have lost five babies in four pregnancies.When we first conceived in August 2014 life was perfect, we were getting married in October. The plan was coming together. Ten days before our wedding day I miscarried at seven weeks, very quickly and suddenly while out and about at work as a carer. It was such a shock, it had never crossed my mind that we would lose our baby. I never believed that would happen to us.

Our vows seemed even more poignant, in sickness and in health; in joy and in sorrow. Only our very nearest and dearest knew out of 200 guests. It was such a bittersweet day. Two months later we were pregnant again, and again, I didn’t believe it could or would happen again. I held on to the nurses words from a month before “Next time you will okay”. 

At an early scan at 5.5 weeks we were told there were two babies – one was bigger and the other very small but a scan a week later would be more accurate and show heartbeats. That week was full of nerves and excitement. Twins seemed so fitting – we had lost a baby but we would have two babies this time. We went to my niece’s birthday party and watched twin boys playing, we smiled and squeezed each others hands, knowing that could be us one day.

At the next scan we were told that the littlest baby was no longer there. ‘Vanishing twin’ someone in the room said. All I could think was “I’ve lost another baby”. The biggest baby was going strong with a perfect heartbeat. We were discharged and told to book in with the community midwife. Everyone’s reaction was similar – at least you still have one. I was gutted, I’d lost two babies in 10 weeks and I was terrified for the baby still inside me.

A month later on Boxing Day 2014 I miscarried our surviving twin. I was nine weeks pregnant. This time I was told by an obs and gynae doctor on duty over the Christmas period to get tested for a list of conditions that could be causing our miscarriages, which she wrote on a blue paper towel. All the blood tests came back normal which we tried to take as a positive. 

It took two years to conceive again and I was terrified. My husband was excited and so confident but we kept it to ourselves, just in case. I was so sick which we took as a positive but I was scared, I didn’t dare do anything. No lifting, carrying, no walking too far. I basically went to work and laid down for months! We had a private scan booked at 10 weeks to relieve some of the nerves. We were over the moon that all was ok and there was our baby waving at us on the screen. Two weeks later the magic 12 week scan where our baby wriggled around like mad. We had made it over the 12 week mark! This baby was coming home.

At 13 weeks on Christmas Day we told all our family – “We are having a baby”. Two weeks later at 15 weeks I had some bleeding and off so we went yet again to the place we hate the most, our local early pregnancy unit. We were told there was less fluid around our baby than she would expect but to keep an eye on any leaking and come back to be scanned again in two weeks. Two days later I felt a little rush of fluid and we made that almost routine panicky journey to the EPU again. My waters completely broke in the waiting room. I went into shock, my legs were shaking. We were called in and I braced myself for hearing those words again “I’m sorry but baby has gone”. Instead she said “there’s baby’s heartbeat but there is very little fluid around baby” – I smiled and sighed, I was so relieved our little one was still alive.

We were then told that this was bad news and we would likely miscarry over the weekend. I couldn’t believe it. How could this happen? Why was it happening and why couldnt they fix it?? My baby was alive so do something to help them! We were sent home to wait for the pain to start and booked in to return on Monday. Monday came around slowly and there was no sign of miscarriage, I grasped at the thought of the fluid building back up and although we might face some tough times ultimately we would bring this baby home. I truly believed as long as our baby was alive they would be ok.

The scan on Monday showed no fluid around baby – fluid was constantly leaking out of the amniotic sac, nothing was around our baby and we were told we would have to terminate the pregnancy. I couldn’t believe what I was hearing. Why on earth would I have a termination? We refused and we were sent home to return a week later. Three weeks later after a blur of appointments we agreed to let our little one go and on 26th January 2017 we met our beautiful tiny son, Bertie.

I was totally unprepared for the physical process but even more shocked at the instant rush of love that hit me when I saw him. This is what they all talk about, that overwhelming hit of love. Leaving the hospital without him was the one of the hardest things I have done. The following days and weeks went by in a fog of teary days and sleepless nights. Dorian went back to work and I just crumbled. We had a funeral and burial provided by the hospital which further crushed our broken hearts. I struggled to find my feet, everything was overwhelming and I couldn’t meet peoples expectations.

I decided I couldn’t return to my job. I needed to find a new normal, I couldn’t cope with just going back to life as had been as if nothing had happened when my life had been turned upside down. I also struggled to be around people that knew I had been pregnant for fear of what they would say and how I would react. I was unsure and scared of everything. Eighteen months passed and I had found my place in a new normal when we conceived again. I sobbed instantly. The fear was too much, Dorian was as ever reassuring and quietly confident. I couldn’t imagine anything other than another miscarriage. I silently pleaded with the universe to give us a break this time. Just let this one come home.

It was the smoothest first trimester we had ever had but I never believed we would be ok. On 31st August 2018 at 13 weeks, two days after a perfect scan we lost another tiny boy, Rupert. Again it was sudden and very quick which I suppose is one small mercy. Another funeral and burial was provided by our local hospital and we were comforted by the fact our boys are close together. Their graves are just two rows apart. 

I think overall the shock and disbelief I felt after our first loss has just been compounded with more shock and grief over the years. I still can’t believe this is our life, that after four pregnancies our home is still so quiet. That we have two graves to tend to. 

I have and still struggle to talk openly about our losses. It’s so difficult to open up about our most painful moments that it’s become a coping mechanism to say nothing. I’ve never posted anything on my personal social media pages. I rarely bring the boys up or talk about how I feel. I find it too painful to bare my broken heart to people. Instead I do things privately like visiting their graves, wearing jewellery that commemorates them. Wherever we go we take a shell or a pebble back for their graves.

We are now under the care of Prof Quenby and the Tommy’s Recurrent Miscarriage Clinic and hopeful that one day we might get lucky while trying to forge a life for two, just in case it doesn’t happen for us. 

To discover more about Tommy’s clinics, visit their website, here.