The 1%: My story of recurrent miscarriage

"Now I greet you from the other side of sorrow and despair, with a love so vast and shattered it will reach you everywhere. And I sing this for the captain whose ship has not been built, for the mother in confusion, her cradle still unfilled." Leonard Cohen, Heart with No Companion

In our real-life version of snakes and ladders we had slid down another snake and were back to the start.

These lyrics really speak to me because I know how incredibly lucky I am able to tell our story ‘from the other side’.  1 in 4 pregnancies end in miscarriage, but for us it was 3 in 4. We were in the unlucky 1% of couples who experience recurrent miscarriage, defined by the NHS as 3 or more consecutive miscarriages.

I was 35 when our daughter was born and we took for granted that we would have a second child. We knew the statistics but many of our friends had had children in their late 30s and we had no reason to think that we wouldn’t too.

I got pregnant almost as soon as we started trying but I had no pregnancy symptoms at all and a gut feeling that something was wrong. We had decided to have the Harmony Test, which included a 10 week ‘viability’ scan. The sonographer started the scan and we waited anxiously for the image to come into view. But there was nothing there, just a black screen.

We were at a private clinic and were offered neither information nor support. Instead, we were taken to a side room with a box of tissues and handed an envelope containing the bill for the scan.  We left in a daze, with a photo and the measurements of an empty sac in a horrible inversion of the exciting ‘baby’s first picture’ experience that so many couples take for granted. At home we worked out that it was a ‘blighted ovum’ or anembryonic pregnancy, which is a kind of missed miscarriage where the pregnancy doesn’t develop – so there was a gestational sac but no baby.

I felt my body had let me down and was angry that I had lost so much time with a ‘pregnancy’ that wasn’t real. I wanted it to be over with as soon as possible so we could start trying again so I had surgical management, which at least meant there was minimal pain or bleeding.

We knew couples who had experienced a miscarriage and had gone on to have a baby soon after so we moved on relatively quickly. We thought we had had our bit of bad luck and next time all would go well.

A few months later I was pregnant again. I’d started to feel some nausea so I was confident this was a ‘real’ pregnancy but we booked an early scan for reassurance. This time we saw the flicker of a heartbeat and my husband let out a sigh of relief.  “Hmmm, I’m not happy” said the consultant, puncturing the relief. She told us our baby was measuring a week behind, its heartbeat was too slow and things weren’t looking hopeful. I was sent home and told to get another scan in a week’s time. We had expected the scan either to reassure us or to confirm another missed miscarriage. We had no idea there is a terrible no man’s land in between the two – an unviable pregnancy.

It took two weeks for our baby’s heart to stop beating and then I had surgery again. It’s easy to write the facts, but almost impossible to articulate the trauma of that fortnight. Lightning had struck twice; I was still pregnant, with a tiny heart beating inside me, but I wasn’t going to be bringing home a baby. I was going to have another miscarriage, but no-one could tell me when or how. Before my miscarriages I was quite rational about early pregnancy, but now I found that I couldn’t think of it as a ‘fetus’ or ‘just a ball of cells’. This was my rainbow child, who was supposed to come just after our daughter’s 3rd birthday, and I was still pregnant with him/her, but that wasn’t going to be our future. He/she wasn’t going to be our baby.

The waiting was awful. I got through each day on autopilot, trying not to let our daughter see my distress. After a week there had been no growth but there was still a faint heartbeat. It seemed so cruel that I was reduced to wishing for a longed-for baby to die quickly to put us out of our misery.

A week later, when the lack of a heartbeat was finally confirmed, my main feeling was relief. After a second surgery, I just felt numb; I couldn’t even cry. It took a few months and some counselling sessions to be able to process what had happened and let myself feel grief for my lost babies and a lost year of trying.

As the months passed, more of our friends started to announce pregnancies and have second babies; first those with children the same age as our daughter, and then those with younger children. I became consumed with anxiety about trying to get pregnant and also with envy and anger that it seemed so easy for everyone else. There were times when the mere sight of a Baby on Board badge or a double buggy would make me cry. It was a very difficult time for us and I became increasingly desperate for another child and sad about my failure (as I saw it) to give our daughter a sibling.

Over a year after our second miscarriage, after we’d both had fertility tests, I still wasn’t pregnant. I had given up hope that I could get pregnant naturally and was worried about leaving it any longer and we made the difficult decision to have IVF. We had the initial appointments but just before we were about to start our cycle we found out I was pregnant. I was terrified but a little part of me hoped that maybe this one was meant to be.

A week later, I came home from an evening out that had taken my mind off my constant anxiety. I was finally feeling more positive. But then I went to the toilet and saw blood. Red blood. I had gone into the bathroom pregnant and come out into a different reality. Having to tell my husband, and make it real, was an awful moment. We didn’t sleep that night and by morning it was clear it was another miscarriage.

It had taken over a year to conceive and I had been pregnant for nine days. Technically this was a chemical pregnancy, but I will never forget the sight of the blood and what it meant. We lost our August baby that night and, all our hopes and dreams for him/her.

Two years, three pregnancies, two due dates and what should have been a first birthday had been and gone.

In our real-life version of snakes and ladders we had slid down another snake and were back to the start.

All the doctors we had seen had said there was no reason we couldn’t have a baby if we kept trying, but I wasn’t getting any younger and the odds of another miscarriage increased with every loss.  I wasn’t sure how I would bear the monthly emotional rollercoaster of trying to conceive – wishing the time away instead of enjoying what we had – only to find we couldn’t get pregnant again or to suffer another loss.

However, two months later, to my surprise, I was pregnant again. I didn’t dare to hope that it would work out.  I counted the days to our first scan and checked for blood whenever I went to the toilet. Pregnancy after loss was a fundamentally different experience. By 12 weeks it was considered a normal, low risk pregnancy in medical terms, but that wasn’t how I experienced it. I felt so vulnerable and full of fear and struggled to manage my anxiety.  I lived from scan to scan and we told nobody save parents until well after 20 weeks. I hid my growing bump. I refused to even take home scan photos because I was so frightened of ‘tempting fate’ by letting myself believe things might be okay. My counsellor was an incredible source of support during this time and it really helped to have a safe space to talk about my fears and be reassured that my feelings were normal.

Nearly 3 years after we started trying for a second child, our beautiful son was born. His middle name is Samuel, after the son of the biblical Hannah, another longed-for child.

We will never forget how it felt to struggle to complete our family. We learned the hard way how fragile pregnancy is and that two lines on a test doesn’t necessarily mean you will be bringing home a baby. The three we lost may not have had names or faces but for a short time they were part of our family and our imagined future.

Our experience has left other scars too. I’ve always been an anxious person and am even more so now that I know what it’s like to be on the wrong side of a statistic. I was brought up to believe that I could achieve anything I wanted through hard work and it was frightening to realise that I had no control and couldn’t even know  what was going on inside my own body. In her book Tears of Sorrow, Seeds of Hope Nina Beth Cardin writes:

“Many of us grew up believing that our health and the ability to control what happens to our bodies are our birthright. We are often shocked and humbled by our first encounters with the limitations of the flesh. And many of these first encounters occur in the realm of fertility.”

This is exactly how it felt, and I still feel shocked and humbled by our experiences.

Our miscarriages were all first trimester losses so we made the choice to go through them privately. Very few people knew about what was happening to us but this also meant that I endured many painful conversations during those years. However well-meant, the questions ‘you have just the one?’ and ‘when are you going to have another?’ are among the worst things you can ask someone experiencing pregnancy loss. You never know if the person you’re talking to has a miscarriage story. Think twice before you ask about people’s plans for a family. Those who asked me meant well, but had no idea of the private pain their innocent questions caused. We may not be aware of individuals who have lost a baby, but we can all be more miscarriage-aware.

 

Amy Braier

January 2019

 

Reprinted with permission from www.isaacuk.wordpress.com