Missed miscarriage and facing the devastating decision to TFMR

We married in April 2016 and started talking about children soon after. I found out I was pregnant on our first anniversary and was nervous but very, very happy.

At the 3 month scan they found I’d had a missed miscarriage. Everything had been normal, I’d been tired, had cravings and no bleeding. I’d never heard of a missed miscarriage, I was so shocked, I’d had no idea anything was wrong.

I was booked in for a D&C the next day and, to be honest, I don’t know how I coped. It wasn’t so much the physical but the emotional side, I stayed in bed for days not wanting to see anyone.

I think I was more scared than anything else, if I got pregnant would it happen again?

Although the nurse explained what was happening, I didn’t really get any support after that, I didn’t know where to go for support. I’d just Google ‘missed miscarriage’ trying to make sense of it and find out if it would happen again, that was my biggest fear.

We started trying a few months later, but after a year and a half nothing had happened and I began to feel stressed. I was referred to the hospital for tests but, a week before my appointment, found out I was pregnant. That went successfully, a straightforward pregnancy and Eva arrived, she will be 2 this month.

Last summer, I found out I was pregnant again; then, in September, I went for a 5 month scan to be told he had a lot of problems, issues with his brain, he was small for his age and he had a problem with his spine.

I suffer anxiety as it is, it went through the roof, I struggled to cope with what I was being told.

I was referred to Queen Charlotte's Hospital, which specialised in this area. They did an amnio, along with other tests, and found a genetic disorder was the cause. They told us that if he was born he would suffer lots of health problems, then they talked us through TFMR.

The most horrible decision 

I think, before that, we’d just thought that we would deal with it as best we could once our baby was born. I’d never heard of TFMR; when I look back I was very naïve. When one of the professors at the hospital went into depth about the quality of life our baby would have, we made our decision and it was the worst, the most horrible decision I’ve ever had to make in my life. 

I was in hospital for a week-and-a-half and it was very traumatic. On Monday they gave me an injection to stop our baby’s heart before I delivered him. They tried to start labour but it wouldn’t work so, the following Monday, I was booked in for a c-section.

I lost my mind a little bit, I didn’t cope well. I was missing my daughter, having panic attacks and crying every day. That baby was still a part of us. I was physically recovering from a c-section, going through all of that with no baby. All that pain for nothing.

One of the bereavement midwives at the hospital referred me for 6 sessions of counselling and that helped quite a lot. I also found groups online where I could just talk to other mothers who had been through the same experience and that made me feel less alone.

I think I felt a lot of grief

After he was born we were able to see him, to spend a little time with him before they took him to the mortuary, and that did help with the grieving - at least we got to say goodbye.

At first I didn’t want to see him. The midwives told us he was in the next room, but part of me couldn’t not see him, so we asked them to leave the door open so we could go in when we were ready and I’m really glad that we did that.

We had him cremated after a post mortem and it was just my husband and me. We didn’t have any special songs, any special plans, we just wanted to say goodbye quietly, in our own way.

I still have ups and downs. We collected his ashes the day after his funeral and we still have them at home. We don’t know where to scatter them, we’re just waiting to find a special place for him.

I heard about Tommy’s through the bereavement midwife and found them online. Their information and the stories I’ve read have been really helpful.

Miscarriage isn’t talked about enough

Since it happened to us, I’ve discovered that a lot of friends and people in my family have been through it and they would never have opened up unless they’d heard our story. I almost wish that I’d known their stories before, maybe I would have been more aware.

I think it would have helped me if I had known more, known what people had gone through. I think it would have helped me to make sense of our loss had I understood how they felt. I have really struggled.

I just wish more people talked about miscarriage, about baby loss, I wish that talking about it didn’t make people feel so scared.