Loss (please note this non fiction piece contains some frank descriptions of pregnancy loss)

Today’s post is a little different. I’ve called it simply, ‘Loss’ and its timing was occasioned by the service shown below, the interview I did last week on recurrent miscarriage and the publication of a book. by Rachel McGrath called  Finding the Rainbow, which you can buy on Amazon. I think Rachel has been very brave to write so frankly about her experience.

Anyway, it struck me that I had never said goodbye, or said something because, by and large, people encouraged me not to talk about it. Or, they were so full of anecdote – for the best possible reasons – that I thought I couldn’t or shouldn’t. So I’ll write something now. My experience was not, in any way, the worst, but if you have a lump of sadness locked away inside you; if you are going through this experience and working out what to do, know that you are not alone.

. www.themiscarriageassociation.com will provide telephone support for you, but otherwise, in my experience, the best support is other women, dads, partners who have been through it. And you might want to consider earplugs for the multitudinous unsolicited advice……

When you first start trying for a baby, perhaps it doesn’t really occur to you that it might not work out. Pregnancy is a physiological truth; something that is meant to happen, right? Often, yes. But there are many cases when this is not the case – around one in four pregnancies end. I didn’t know this when I was pregnant for the first time and sat, bewildered, unable to comprehend what was going on. It happened again, then again. By this time I was full of others’ advice: I could have told you a thousand horror stories, birth stories, infertility stories; given you plentiful anecdote: here are things not to say:

‘Oh, you’re probably not psychologically ready to have a baby’;

‘Well you are quite an anxious person, so perhaps that’s why you can’t carry a baby’

‘I think women these days are too aware of pregnancy and lots of pregnancies were lost in the past, unknowing, because women didn’t obsess so much.’

‘You could come and babysit for me instead/If you adopt, you’ll probably fall pregnant straight away’/Let me tell you my blood curdling story about a person I knew….’

Or,

‘If you think about it, years ago women just expected this to happen and got on with it.’ To which my riposte would have been, ‘I do see your point, but one of my grandmothers had ten children who survived, but did she talk about the losses she had? Yes: she told me, in her late seventies. She didn’t forget. She willed them into memory by talking about them.’ Looking at the poster for the ‘Saying goodbye’ service, at top, you’ll see they thought about that: ‘…..whether eighty years ago……’

Then there was another thing: for me, family was a flexible constuct. I did not feel – and I’ve not verbalised this publicly before – bonded with my mother. There’s something else that’s a taboo subject: that other mother figures in your life go on to carry more importance than the woman you birthed you or parented you. I won’t elucidate this further now, save to say, that I had other ways I felt I might embrace parenting. But I thought I would try a little longer to have a birth child and then think more if it didn’t work out.

So, after three miscarriages, I was referred for some tests; the results came back with something surprising. I had lupus. And I also had what is called a balanced translocation. A picture of my chromosomes showed that part of my sixth chromosome had swapped places with part of my seventeenth. If you inherit this in its ‘balanced’ form, it won’t affect you. You have all the genetic information you need to make you. But when you conceive, well, you know that the pairs of chromosomes are from each parent? One half of a pair from you; one half from him. In my case – and I am simplifying this here – that could mean a baby inheriting my ‘balanced form’ (and therefore being a carrier themselves, but otherwise healthy), or it could mean too much of chromosome seventeen and too little of six, or too much of six and not enough of seventeen. In other words, a partial ‘trisomy’ (a trisomy is an additional chromosome), or a deletion (a bit missing). One combination showed some recorded cases of extremely life-limited babies; the other combination was thought to be incompatible with life

. I feel bound to say that if you are reading this, as the one in five hundred people diagnosed with a translocation and, by some extraordinary chance are recording the same pattern as me, I urge you to look up details or ask a professional – for example a clinical genetic nurse – to find them for you; there may be newer information of which I am unaware. And also, ‘Hello.’ I have never met anyone else with a translocation, but now you know who I am. You’re not alone. x

This was my lowest point. Lupus, a balanced translocation and the recommendation of genetic testing in any future pregnancy, which carried with it the slight risk of miscarriage. Christmas. My husband and I felt very alone; I didn’t feel like I could tell anyone and, often, when I did, anecdote ensued which tended to make my head more full and make both of us feel under greater stress. Not very festive.

But then in the new year came more news: we met (not her real name) a lady I shall call PQ (P and Q are the letters given to the short and long arms of chromosomes) and she, a clinical genetic nurse, explained that my translocation was even rarer because – as the hospital had not clarified – it was a mosaicism: it wasn’t in all my cells. I had normal cells and those carrying the translocation, which in my understanding meant that it was spontaneous in me – occurring at cell mitosis, when first I began. Inside, I was like a kaleidoscope.

It also turned out I didn’t have lupus. They mixed up my records with someone else’s.

I had two further miscarriages; the fifth was further on, but it was what is termed a ‘missed abortion’. That’s where – I am speaking frankly and I so hope I don’t upset you, dear reader – the foetus dies inside you. I went off and cried, on and off, for a day, but I did not miscarry, so I had to go for a D and C: I’d never had an operation before.

I got pregnant again. I want to tell you this. PQ came round and armed us with a lot of information. And she said – I will always remember it,

‘People with translocations can and do have healthy babies.’ We also learned that, in the operation I had just had, they had identified my quirky cell line. Which way it fell, I did’t ask.

The obstetrician said gently, ‘Do you want to know the sex of the baby?’ We were stunned; I, in particular, had never used the word ‘baby’ because it seemed wrong. Wrong to use it when other women carried babies to term and lost them. I didn’t deserve to use the word. Does that make sense?

But we didn’t find out. I do think about that sometimes and I could ask, I suppose. I’m not sure.

My heart goes out to those who never know why they don’t carry a baby to term. No-one would say to us, ‘Yes – this is definitely the reason why you keep miscarrying’, but PQ did say, ‘This is a likely explanation.’ So you see, for us, it was frightening, but we weren’t so much in the dark now.

I was still pregnant. Nervous, constantly checking to see if I was bleeding; feeling every twinge.

And the obstetrician said,

‘Don’t put additional pressure on yourself. You can’t avoid being nervous after what you’ve been through. This is how it is now.’

That might not be the right advice for everyone, but it was the right information for me.I couldn’t expect pregnancy to be a rosy, romantic time. I never had that experience, but that’s no hardship.

This pregnancy continued. We had amniocentesis. I turned away as hard as a I could from the screen; couldn’t bear the thought of seeing. I fainted outside the room and PQ picked me up. I’d never fainted before in my life. Also, she was tiny: I don’t know how, the size of the prettiest borrower you ever did see, she got me on the gurney.

The wait for the cells to be cultured is excruciating, so you crack on.

PQ rang – and I am weeping, just weeping, writing this, but she said,

‘PQ here; got the results; normal chromosomes; not inherited your balanced form and do you want to know if it’s a boy or a girl?’

Baby.

Baby boy.

I want to say that PQ was the first person to see newborn baby. She said,

‘Oh, oh, oh!’ Then she said, because she was a geneticist, ‘Now do you believe what the books said about positive outcomes?’

‘Oh PQ!’ And came the tears like summer tempests. You know, I was unable to say the word, ‘son’? I tried, but was mute. It felt too precious to say, as if naming would invoke some form of divine nemesis and my blessing would be revoked. I don’t know if anyone else has had this experience. I said, instead, ‘the baby.’ My husband rehearsed me. It was important, he said, to say, ‘This is my son.’ He was right. It was an acknowledgement. We cannot say our children will always be safe; there is no life without risk: it is important to face this, without fear, and embrace what you are given and embrace – and name – that which you love.

Two years later, I was expecting again. I had miscarried three times in the meantime; it had been sad and difficult. I realise, looking back, that I didn’t really talk about it at all. It’s like it never happened. And people, as I wrote above, can be rich in anecdote. Or they are embarrassed because pregnancy loss, for whatever reason, is a taboo subject. But PQ was there again and this time I had CVS, meaning I could testing a little earlier. As with the amnio, there is a risk of miscarriage and, as with the first lot of tests, I went away and my instinct was to stay still and quiet and separate as much as was possible. Keeping still doesn’t stop a miscarriage, but it does help you to feel safe and calm.

This time, my husband wasn’t here on the day we expected the call. My friend Alexi, whom I will name because, as I said to her earlier in the week, she is clearly perfect in every way, was by the phone with me, holding my hand.

‘PQ again. Good news. All clear and no inheritance of the balanced form and do you….’

‘Yes.’

‘Another boy.’

More tempests.

We had another …..son, too. I am actually stuggling to write this word because the sensations surrounded with it do linger. I had three more miscarriages, gave up, but after a few years, we decided to try again. There was a seven year gap between second and third boy, but here was PQ again. This time, however, we found ourselves in an unexpected situation. Lying waiting for CVS, the obstetrician getting ready beside me, she suddenly stopped what she was doing and said,

‘I can’t do this. I know it’s not scientific, but I don’t feel I should perform CVS because everything looks fine to me.’

Lying prone I said,

‘But how can we say that?’

She said,

‘We can’t – I just – I can see that little figure jumping around. I just feel…’

I imagine that this was unexpected. It was a stressful situation to be in. I was crying and we held one another’s gaze and she was upset too – and I understood her dilemma and utterly respected her. So I got up and said,

‘We will go away and think.’

We did think and, knowing the risks, we went back and I had CVS. I think it was because we had two other children to consider. But it was not an easy decision; to have any invasive testing is not an easy or comfortable decision. I fainted again.

And PQ rang. And it was well. She was there again when baby number three was just a couple of hours old.

And that is my story. PQ has a family tree in the hospital where she works; our boys are on it.

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I hope that wasn’t too much information for you. Writing this is, I realise, my way of saying goodbye. Later today, I am going to plant some flowers in our garden: roses – flowers that will last and foliage that will climb and thrive. I never marked all those times – the eleven elsewheres – that didn’t. Never knew how to think of them – whether as babies, souls, as in any way sentient or feeling pain: I will probably never know or square this. But I hope that, if you have experienced loss, what I have written might make you feel less alone, although my story will be different from yours. It may be that my description of so many miscarriages gives you hope, or it may be that you already know you cannot face further loss: this I understand. I think that being a mother – and by whatever means – is not the only way to have a  fulfilled and happy life. I think – and I am worrying about whether I have the wording right here; I am not sure I have the right to say what I am about to – that it is one part of one way. And should you try, yet  find that it does not happen for you, then what I feel is this: you are not less woman: you are more because you had the strength and the love to try – and then to bear loss. And you are magnificent.