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Nicola’s story: recurrent miscarriage

Nicola shares her story of recurrent miscarriage. She talks about the grief she feels and other people's reactions.

There’s a common misconception that having another baby somehow ‘fixes’ things and that I should now feel fine. But I am still grieving my babies and will always wonder who they were.

I have been pregnant eight times and I have two living children. Six of my babies died during pregnancy as I suffer from recurrent miscarriage.

My first pregnancy ended at seven weeks in miscarriage, which was a huge shock but we put it down to bad luck. I conceived my son the next month and he was born after a normal pregnancy. When he was one we started trying for another baby and it took a while to conceive but when we found I was pregnant we were thrilled and just thought that everything would be fine. At seven weeks I had a healthy looking baby with a heartbeat, but at ten weeks we discovered that the baby had died and I miscarried. It was such a shock.

I was soon pregnant again, but had a very early miscarriage. A few months later I found out I was again pregnant. It felt more positive, but at seven weeks I started to bleed, a scan showed a twin pregnancy that wasn’t progressing and I miscarried. I lost another baby two months later, at the same point in the pregnancy – seven weeks.

I was distraught and desperate. It felt like everywhere I looked my friends were pregnant and having healthy pregnancies and babies. Every day felt sad and heavy seeing the pregnancy announcements as my mum friends from my son’s baby groups were having second babies, whilst ours had died. It felt so unfair.

All investigations by the GP and hospital miscarriage clinic came back normal and I was told to ‘just keep trying’. When trawling the internet for answers to why I was miscarrying I found a forum post about recurrent miscarriage and this was when I first heard about natural killer cells and their link to miscarriage. After several months of waiting and asking my GP I managed to secure an appointment with one of the UK’s specialist NHS miscarriage clinics. It was discovered that my natural killer cells were aggressive and I was put on a treatment plan of prednisolone steroids, aspirin, progesterone and high dose vitamin D.

A month after starting treatment I was pregnant again and we were excited because I was on the treatment. There was a heartbeat at six and seven weeks and it seemed like the treatment was working. A week later the baby’s heartbeat was no longer there. The shock was horrible and I had to go through a procedure to remove the baby as I wasn’t miscarrying naturally. This was the hardest one by far because I’d pinned my hopes on the treatment working. I had to wait for a week to have the procedure; walking around with my baby inside me and knowing he or she had died took its toll on me mentally and I felt broken. Following the miscarriage hydroxychloroquine was added to my treatment plan.

It took a long time to get pregnant again, but eventually I was pregnant with my daughter who is now 22 months old as I write this. My pregnancy was healthy and ‘normal’ to an outsider, however the anxiety was crippling. I felt like a prisoner inside my head, terrified of every twinge and I spent a fortune on weekly scans to check that the baby was still alive. I would get scans done wherever I was in the country for work and didn’t tell my husband that I was having them. Every day I would just will for the pregnancy time to go by quickly, but also I had a feeling of dread as I was resigned to never meeting my baby. It meant that I struggled to bond with her during pregnancy and I withdrew from friends and family because I felt that no one understood.

Most of my miscarriages happened when I was alone. I’ve been through some of the worst things I’ve ever had to experience. I’ve held my babies in my hand and had to put them in a box to take them to hospital for investigation, something no one should have to do. There’s no support for parents going through this from the NHS – very little guidance on what to do if you miscarry at home, what options you may have for burial or cremation (unfortunately very few I discovered!).

The physical side of the scans, examinations, surgery, investigations, take their toll. I was exhausted and broken. Miscarriage is a horrible experience to go through, but it’s made even worse by the way it’s managed by society and by the medical side. The terminology used is unsympathetic, talking about ‘products of conception’. I felt like screaming ‘that’s my baby!’ when I had to sign the paper in the hospital to have them sent away for examination.

You go home empty handed and numb and unless you tell anyone about it then no one knows you are grieving. I would be met by awkward silence if I mentioned what I was going through, because people don’t know what to say. I was often on the receiving end of well-meant but hurtful platitudes like ‘at least you know you can get pregnant’, or ‘at least it wasn’t further along’. ‘At least you have your son’ was common.

I wanted to scream at people that my babies existed, that my babies were important, and that I was hurting. The Miscarriage Association gave me the opportunity to put my babies onto the forget me not field, or register a star, which helps to feel they existed. They were real.

There’s no support post miscarriage, just a leaflet. I’ve tried to get counselling but I was told I don’t qualify. Help should be more available for grieving parents.

Since my daughter was born I definitely feel brighter, but I’m still struggling with grief for my babies. I suffered with postnatal depression and I am on antidepressants. I feel like it’s all related to what I went through and the horrible things I’ve seen and had to endure during my miscarriages. My daughter is the most wonderful little girl and I’d love to be able to enjoy the family we so longed for, but the grief hangs over me and I know that I’ll never be the same person I was before.

Miscarriage isolates you – people still act like it’s taboo to talk about it, which only adds to the loneliness. Friends who had been through it were brilliant, contacting me to check on me and let me know they were there. But others kept their distance and it was like people didn’t know how to act around me anymore or what to say.

There’s a common misconception that having another baby somehow ‘fixes’ things and that I should now feel fine. But I am still grieving my babies and will always wonder who they were.