Miscarriage: the anguish of hidden grief | The Times

18/09/2013 21:35

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Miscarriage: the anguish of hidden grief

A controversial new treatment enabled Lisa Francesca Nand to have a successful pregnancy after several miscarriages Times photographer, Bethany Clarke

Lisa Francesca Nand

Last updated at 12:01AM, September 17 2013

As research gives hope to those suffering recurrent miscarriages, Lisa Francesca Nand relives the pain of her experience
I was just one day from the milestone 12-week scan when my pregnancy began to go wrong. I thought that I had crossed the typical danger zone I was wrong. Although gentle at first, the contractions soon began to come in waves. Within an hour I was on the floor, knocked over with each contraction and unable to walk. I was in Brighton for the weekend seeing friends and my husband, David, and I left our seaside picnic to go to the local hospital. It was Sunday evening and the weekend, I now know, is a lousy time to have a miscarriage. The doctor was largely unsympathetic and sent me away with some paracet amol. I also know that nothing could have been done to change things, but there were no kind words to explain this. The drive home to London was punctuated by my screams, the contractions coming up to every minute. Id like to spare you the gory details, but I am not sure that I should. Professor Lesley Regan, head of the NHS recurrent miscarriage clinic at St Marys Hospital in London, says that one in five women present to the clinic with levels of distress so severe its akin to that of a psychiatric inpatient. Surely something that causes such misery deserves more attention? By the time of the scan the next day I was bleeding heavily. Between tears I quietly let the receptionist know the blood wouldnt flush in the broken hospital toilet. The ultrasound technician was completely uncommunicative Im assuming she didnt know what to say, so said virtually nothing. It was clear the baby was dead. Measuring eight weeks instead of 12, he or she had died a few weeks ago. One in four pregnancies ends in miscarriage, but because we dont want to discuss blood and death and wombs it remains a hidden grief. For some women its a tragedy that is visited upon them many times. One in one hundred women suffer from recurrent miscarriages, but conventional medicine offers no explanation and no cure. Even the experts disagree with each other about what treatment works and what doesnt, and each conducts different tests. So the news last week that scientists had finally proven a cause of and way of averting some miscarriages offered some hope for those whose pregnancies repeatedly end in misfortune.
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Miscarriage: the anguish of hidden grief | The Times

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I understand how they must feel. This wasnt my first miscarriage. Id had two pregnancies that ended in a similar way in my late teens and early 20s. Id been irresponsible. The babies werent wanted, so I shrugged it off in the way only someone who doesnt want a child can. However, losing this very much longed-for baby sent my world into freefall. As a journalist I retreated into research mode, so much so that I developed RSI from obsessively trawling the internet for explanations. What could cause three miscarriages surely that cant just be bad luck? I started filming my experience and findings. I didnt know it then, but this wasnt going to be my last pregnancy loss. Theres an odd silence surrounding miscarriage, despite the powerful grief it engenders. In purely physical terms nothing but the basics are discussed. It feels like theres something almost embarrassing about it. Its almost impossible to describe the sense of failure that accompanies being sent home to miscarry naturally; to have to sit on a toilet for hours, pushing out the sac. I couldnt look, but I know people who have; and yes there is a tiny baby in there. I hated the idea people might feel sorry for me, but if they didnt I hated that too. Most people hadnt known I was pregnant, but our lives had already changed. We knew the due date, we made plans, we tentatively dreamt of names for our new family member. In our minds we were becoming parents, but then all of a sudden we had to revert back. I went through the motions of day-to-day life feeling emotionally bruised. I should have been planning for the babys arrival, but instead I was socialising intensively to numb the pain, waking up at 4am with my head throbbing, still surprised I was now able to drink. I wondered obsessively whether I would ever become a mum, desperately wanting to try again but terrified of going through it all over again. My family were very supportive, they were devastated too; and some friends confided that theyd also had a miscarriage but hadnt felt able to talk about it. Other peoples pregnancies were hard to take. Although I tried to be happy for them, their blissfully unaware Facebook postings of 12-week scans hit me hard, a reminder of how Id watched overjoyed faces emerging from their ultrasounds clutching photos of their avocado-sized babies, as Id waited for the crushing results from my own scan. In order to qualify for miscarriage investigation and treatment on the NHS you have to have had three consecutive miscarriages with the same partner. Despite this being my third miscarriage I still didnt fully qualify for NHS investigations. I had to become my own expert. To my surprise I found a potential answer on Mumsnet, a site Id always thought sounded rather twee before its miscarriage forum became my lifeline. The talk threads were filled with clever, informed women, each doing their own feverish research. Trawling their posts led me to suspect I had something called a high level of Natural Killer (NK) cells, something scientists believe affects up to one in three women. The theory is that the immune system attacks the foetus as a foreign object. I arranged to see Mr Hassan Shehata, a surgeon at the Miscarriage Clinic a pioneer in treating this problem whose name came up regularly in posts. My suspicions were confirmed by a blood test. I was shocked to learn that my level of killer cells was among the top 5 per cent seen in the clinic. It didnt bode well. I was put on a cocktail of medications and supplements, considered by some to be controversial. The main drug was prednisolone steroids from ovulation, accompanied by a low-dose aspirin. Shehata has been treating women with steroids for such immune issues since 2004 with a success rate of around 85 per cent. However, St Marys dont test NK cell levels and concentrate on the area of thrombophilias or blood clotting. Shehata and Professor Regan agree that they are at polar opposites when it comes to research and treatment. The steroids are a nasty drug with side-effects including insomnia, shaking, intense hunger, powerful bouts of energy (not in a good way) and a rather un-fetching moon face, just to add to my misery. I was also on a monthly drip of intralipids, a soy, milk and egg mix, thought to help suppress the killer cells. To my joy I became pregnant again quickly, but my cautious optimism was short-lived. A round of scans, with an agonising week-long wait between each of them, revealed an empty sac as the baby had failed to develop beyond a tiny spec, culminating at eight weeks in a traumatic and a very sad ERPC (the awfully titled Evacuation of the Retained Products of Conception). Shehata decided that with my unusually high level of killer cells it was time to try something more. He added an immune modulator called hydroxycholoroquine and I became only the second person he had ever prescribed it to. All I had to do now was try to get pregnant again. My four miscarriages pale in comparison to the experience of some of the women who became my lifeline on the Mumsnet forums and who Ive interviewed for First Heartbeat, the documentary on the topic that Ive been filming. After six, eight and sometimes even more miscarriages, some of these women are still trying. One of Shehatas patients had 18 miscarriages before she found him and had a successful pregnancy on his treatment. On top of the lack of consensus over cause and treatment, the forums buzz with stories about the shocking lack of compassion from the medical profession, where disinterested sonographers and jaded doctors are the norm. Many people reported that, even though theyd had the prerequisite three miscarriages, they werent told by doctors about the treatments or specialists available. Many doctors believe that its simply bad luck, and that you need to try again. And, possibly, again and again. Its also very common for womens requests for their retained products to be tested tests that might reveal chromosomal issues or something else to simply be ignored. In response to the overwhelming number of posts on shoddy care, in October 2011
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Mumsnet launched a Better Treatment of Miscarriage Campaign), asking the NHS to provide appropriate, responsive treatment for miscarriage. It was 4 oclock in the morning, three months after the ERPC, when I got another positive pregnancy test. My third in ten months. An early scan revealed a tiny, flickering heartbeat the first one Id ever seen. I was immediately terrified it would die. Time has never dragged so much as that first trimester as I took it day by day, scan by scan. As each month crawled by my fear ratcheted up. I bought a Doppler heart monitor to help me listen to the babys heartbeat at home, each time I searched for it expecting it to be gone. It was no surprise to me when, after years of debate, scientists at the University of Warwick announced last week that they had been able to prove that low steroid levels lead to some miscarriages. Prof Siobhan Quenby, who led the research, said: The routine advice in the UK is if blood tests identify no cause then theres no treatment, thats terribly unacceptable to patients. This work is really exciting because, after years of controversy and doubt, we have a crucial breakthrough. The announcement set alight the recurrent miscarriage forums, but only confirmed what I already knew. Because despite my fears and my moonface my treatment proved successful. That first heartbeat is now sleeping upstairs as I write this, a little boy called Sebastian born a year ago. Every day Im thankful I found the treatment when I did. Without it I am pretty sure I wouldnt have had Sebastian. The question of trying for a second child is always there, but I know I could have miscarriages again. Although I am willing to go through it, my husband is not so sure. Men tend to get overlooked when miscarriages happen, and the fact he doesnt feel he can face it again shows how deeply he has been affected. Personally, I would give myself a limit of three pregnancies to have a second baby. But I also know first-hand through my friends on the miscarriage forum that its virtually impossible to draw the line. Theres always that chance that the ultimate prize, the pregnancy that goes full term, could be the next one. miscarriageclinic.co.uk mumsnet.com/Talk/miscarriage
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Diane Purkiss

13 hours ago

Brave and excellent piece. I had a miscarriage and it wrecked my world for a while, and made my second pregnancy a rack of anxiety. (I was one of the lucky ones; I conceived again less than a year later with no treatment, and have two lovely children). Not everyone will feel it as intensely as you did and as I did, but grief is very individual should be treated with far more sympathy, tact and professional concern than is currently the case with miscarriage. I really minded that nobody seemed to care about the lost life. Nobody was even sorry. No woman should be told to pull themselves together any more than they should be after a stillbirth or the loss of a child. Those griefs are perhaps worse, but there is a specific misery about miscarriage. After miscarriage, there is the added unhappiness of self-examination; was it my fault because I had a glass of wine/ate rinded cheese/went for a run? And the worry that there is something wrong, something really wrong, that will mean the same thing will happen again.
3 Recommended Reply

DMG

1 day ago

Great article, I don't want to comment on the effectiveness or otherwise of this particular treatment, but I think it is really important to raise this issue. Far too many people assume that making a baby is simply a case of throwing out the contraception, but for those unable to conceive or even worse that are are prone to miscarriage it can be incredibly difficult. The early stages of pregnancy can be absolutely terrifying in either case and for some couples it can come to completely define their relationship.
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Miscarriage: the anguish of hidden grief | The Times

18/09/2013 21:35

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Penny

1 day ago

Get a grip woman. If every woman who had a miscarriage told the details, we would be reading them forever. That includes me and an experience I was very sad about, but not one I allowed myself or my husband to feel as emotional as this. It is nature's way of expelling a non-viable foetus. This can lead you to further investigations in order to have a viable pregnancy. That's it.
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Victoria Griffiths

1 day ago

Penny, what a heartless thing to say. I never reply to posts like this but after suffering for years of infertility, to suddenly fall pregnant was the biggest gift and miracle that I could ever have been blessed with. To lose the baby - for that is what many people consider it, rather than just a "non-viable fetus" - was absolutely devastating. I suffered from depression for a long time afterwards, and felt that I had to completely reassess my life - I felt that my world had come to an end, and that the reason for me being alive was just no longer there. This also included coping with cruel reactions like yours and the endless stream of people becoming pregnant around you and going on to have happy and contented babies. I quite appreciate that each pregnancy is different and that everyone's reactions to miscarriage are equally as different, but to be so dismissive is to dismiss the very real thoughts and feelings that make us human beings and which can make many people (i.e. women AND men) compress feelings which make everything worse. It's not allowing yourself to grieve that prevents the healing process from taking place.
17 Recommend Reply

Salahsue

1 day ago

@Penny Wow! Remind me not to tell you about bad things that happened to me. You had one miscarriage, that you apparently didn't allow yourself to grieve for, whereas Lisa had 4, and some women have had 18 or more. Maybe you didn't need to grieve like this, maybe your experience wasn't as extreme, but to tell her to get a grip is cruel and unfeeling. For shame!
12 Recommended Reply

Penny

1 day ago

@Salahsue @Penny I lost twins at 17 weeks. And I did grieve but did not put it on to other people.
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Victoria Griffiths

1 day ago

But you are putting on to other people by telling them that they shouldn't behave in a particular way. I'm sorry for your loss.
4 Recommended Reply

Penny

1 day ago

@Victoria Griffiths Well I am just trying to say what will be, will be. You have to be philosophical about these things. Miscarriages are horrible but they are because the baby is not viable in some way, and the sad fact is that this is how you should deal with it, as not being meant to happen for that reason, sad though that is. I was hardly laughing my head off when it happened to me. I had a child before it, and one after, both were premature and the second was in special care for weeks. They are healthy and happy adults now. What will be, will be.
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Sarah Rook

1 day ago

@Penny wow your level of compassion is truly outstanding. What a maternal woman you sound....
3 Recommend Reply

Penny

1 day ago

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18/09/2013 21:35

@Sarah Rook @Penny I am maternal. That is nothing to do with this piece at all.
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R Mackie

1 day ago

That is a heartless comment. Even if sharing painful experiences like this wasn't useful for the person involved and for readers who may have gone through the same thing, articles like this, about little-discussed issues, would still be useful for raising awareness of problems with such issues. From what the lady says it sounds like the way the NHS deals with repeat miscarriages may be inadequate and I for one find that to be interesting and useful information.
4 Recommend Reply

Penny

1 day ago

@R Mackie It's a case of pragmatism and fatalism in that it is something you can't alter.
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R Mackie

1 day ago

I imagine that every woman must deal with miscarriage differently. I would keep telling myself how common miscarriages are, but that is me. How can you look down on someone sharing their experience like this? Death is an inevitability but that doesn't stop it being sad. I should imagine its the rather taboo nature of miscarriage over the years ("hush dear, it happens to most of us") that makes it a poorly understood area with relatively little progress in understanding over the years. I once applied for a job as a clinical cytogeneticist and it wasn't until I actually did the research necessary for that that I realised a proportuon of cases of recurrant miscarriage were caused by a chromosomal translocation in the father or mother- this can cause repeated miscarriage due to chromosomal mismatch. I had never heard this before simply cos it wasn't often discussed in modern study of genetics and it certainly wasn't discussed in public/ the media. Point being that as I understand in such cases in vitro techniques can help the couple achieve successfulmpregnancy. But most won't get that far, they'll probably never learn why they are so prone to miscarriage.
2 Recommend Reply

EnglishRose

1 day ago

The husbsand may not be prepared to go through with an attempt to have a second child? Wow, poor diddums. Also as they now know how to make a baby stick inside her why is he so fearful. He should be forced to endure it. I don't think he has a right to deny her a second child or a third or fourth and if they want a 2 year age gap they need to get on with it now.
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Salahsue

1 day ago

@EnglishRose So you're denying him any right to be traumatized by the experience not only of watching his wife suffer physically but also emotionally? So all he has to do is "make a deposit", what more does a man/father do during a pregnancy after all? Insensitive.
6 Recommend Reply

EnglishRose

1 day ago

@Salahsue @EnglishRose No one says the father does not have nor cannot have feelings but to force her not to have more children is a step too far. He clearly intended they would have more than one. Stopping her having a second baby is very cruel.
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Billie D

1 day ago

@EnglishRose @Salahsue I have to say I too was surprised that Linda Rands husband is the one who is too traumatized by previous miscarriages to feel that the risk of another one would be the reason given for not attempting to add to the family. I fail to understand how a

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potential fathers trauma could out weigh a potential mothers. For the mother a miscarriage is also experienced as a traumatic physical loss in addition to an emotional loss. Maybe her husband has other reasons not to want an addition to the family? Because if Linda herself is prepared to try especially considering the success of the treatment if he really would like another child maybe he should just "man up". Apart from that what a nice happy ending story to read.
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Victoria Griffiths

1 day ago

@Billie D @EnglishRose @Salahsue Perhaps feeling completely powerless in this position, and being completely terrified of seeing their partners experiencing something so traumatic, in addition to their own feelings of despair, is what makes many men so very reluctant to repeat or risk that pain again. Sometimes deciding that you can't go through that again is the strongest but hardest decision one can make. It has to be a personal decision, made in partnership with the person you love.
1 Recommend Reply

EnglishRose

14 hours ago

@Victoria Griffiths @Billie D @EnglishRose @Salahsue Yes but he won't have to go through it again will he? They now know how to stop her losing babies so if he says I will be going through it again he is plain wrong, surely and just needs an explanation from the doctor. They now know how to stop her babies miscarrying. There is a much wider issue here for all parents who are part of a couple whether they have fertility problems or not - and given 30% of babies are conceived without the other person's consent - how do couples decide? I would say agree it before marriage - number of children. There are also plenty of men who would love another and be prepared to care for it full time or pay for a nanny and yet even so their wife refuses.
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