Struggling to bring home your babies in the 2020s is a strange combination of ‘unlucky’ and ‘lucky’.

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On the one hand, I am frequently overwhelmed by how shit the hand we’ve been dealt is. Not only are we ‘infertile’ – we have only conceived naturally once in the last three years we also belong to the ‘one in one hundred’ – the one percent of couples who suffer from recurrent miscarriage. In my book, that’s pretty bad luck

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However, I do feel fortunate; I’d rather be infertile and struggling with miscarriage now than at any time in history. Developments in fertility and miscarriage treatment mean that there is hope for couples who would have been written off as ‘barren’ a hundred years ago – even fifty years ago. I remember reading a play called ‘La Casa de Bernarda Alba’ for my Spanish A-level and being struck by the despair and social stigmatisation of the women in the play who couldn’t have children. Thank God I live in the 21st century. I am generally not thought of as a failure or less of a woman because I cannot have children without significant medical intervention and quite possibly the help of another woman, and I can also benefit from huge advances in reproductive science in the last 40 or so years. This is particularly true because my husband and I are lucky enough to be able to afford the investigations and treatment we need, as long as it doesn’t go on for too much longer.

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I have certainly felt like I am in the midst of a science experiment over the last two and a half years. Even ‘straightforward’ IVF is an assault course of blood tests, injections, pills, nose sprays, scans, operations and pessaries. With each of our eight transfers we have layered on more tests and more treatments: some of them standard, some of them experimental. I thought I would share some of those tests and treatments, because some of you may encounter them at one stage or another on your journey, and also because, frankly, some of them are weird! Please excuse any inaccurate terminology or non-scientific language: I’ve tried my best, but I’m a marketer and writer with qualifications in the humanities and the arts, about as far from biology and medicine as it is possible to get. The following are all my understanding of our issues – you should of course always consult with your doctor before drawing any conclusions about your own situation.

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Initial tests

When we started worrying that we weren’t conceiving, my husband and I had our initial tests with our GP. I think they actually ended up missing some fairly crucial ones for me (AMH and FSH, for example), but they checked my general health and my liver and kidney function, and carried out a trans-vaginal scan to check my uterus. Everything looked fine (oh the innocence…). 

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My husband had a semen analysis, which showed that while he had pretty good concentration and motility, his morphology was poor – a grand total of zero percent of his sperm were a ‘normal’ shape. That was the catalyst for referring us to IVF.

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Tests at the fertility clinic

After we had our first consultation with the consultant at the fertility clinic, my AMH, FSH and thyroid function were tested. My AMH was on the low side of normal for my age, but the doctor wasn’t particularly concerned, as long as we got cracking – which we did. My thyroid tests revealed that I have subclinical hypothyroidism – a slightly under-active thyroid which untreated, can affect fertility and cause miscarriage. This runs in my family so was unsurprising – I was prescribed levothyroxine, which my mum has taken for years and is very safe and effective.

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Not just bad luck

When, after our third miscarriage, our doctors realised that this wasn’t just ‘bad luck’, we were sent for a slew of tests. I was tested for blood clotting abnormalities and lupus – both of which were negative. They also sent me for an HSG (hysterosalpingogram), where they put iodine into your uterus and use an x-ray to check for any blockages in your fallopian tubes. All was clear. My husband had a sperm DNA analysis (he was pleased as punch with his ‘excellent’ results) and we both had karyotyping, which checks for genetic variations. No problems. What we did find was that I had raised natural killer (NK) cells – the theory here is that I have an overactive immune response to embryos – my body recognises them not as a potential baby, but as a foreign body that needs to be expelled. 

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It was also around this time that my husband discovered he had a varicocele in his left testicle – a varicocele is an enlargement of the veins in the scrotum, which blocks blood flow to the testicle – and could affect sperm quality. This was removed in an incredible, if squeamish procedure called an embolisation, which takes little more than an hour. A catheter is threaded through the neck, down through the heart (!) and then on down to a vein in the groin, where tiny coils are placed to redirect blood flow back to the circulatory system via an alternative route.

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Mayonnaise

The discovery that my immune system’s reaction to anything it views as alien could be equated to sending in an army when someone spills your drink meant that I have been given immunotherapy with every transfer from number five onwards. We started with the milder and, frankly, cheaper treatment option, intralipids. This is an intravenous infusion (i.e. given as a drip) made chiefly of egg and soya oil. Yes: the main ingredients of mayonnaise are egg and oil, so I essentially had mayonnaise pumped into a vein in my elbow. I don’t even want to know how many calories I ingested that day! 

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Mutants

After our fifth embryo transfer failed, our IVF consultant referred us to a miscarriage and implantation specialist at a London hospital. He ran some further tests on both me and my husband. These revealed that we both have genetic mutations… The specialist reassured us that we are not in fact zombies, and that these types of mutations are pretty common. One was a mutation of the MTHFR gene which is, among other things, responsible for breaking down folic acid into its usable form. The mutation means that my husband and I, and likely our babies, are unable to break down folic acid as efficiently as is ideal, so I have to take a natural form, called methylfolate. I also have a blood clotting mutation, which was not revealed in my previous blood clotting screening. Another revelation was that I am positive for antinuclear antibodies (ANAs), which are a non-specific marker of autoimmunity. I have never been diagnosed with an autoimmune condition, although my hyperflexible joints  and perpetually cold fingers are, I subsequently learned, indicators that something like that could be going on. I was prescribed hydroxychloroquine for the autoimmunity, made infamous, alongside bleach, by one Donald Trump as a ‘cure-all’ for Covid-19 (to be clear, neither works for Covid).

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Human plasma and surgery

Our sixth transfer was accompanied with treatment for the miscarriage specialist’s diagnoses, as well as IVIg (intravenous immune globulin), which is a drip made of human plasma, normally used for organ transplant patients. I tried not to think too hard about the human element as it dripped into my vein, nor about the eye-watering cost. Sadly, I went on to have another miscarriage. The miscarriage specialist recommended that I have a hysteroscopy, where the surgeon examines the inside of the womb with a camera. The surgeon found some intrauterine adhesions and mild scarring, also known as Asherman’s syndrome. We’re not sure how they got there – they are almost always caused by surgical trauma to the uterus, for example caesarian sections or D&C after a miscarriage, but I have not had either of these. He was able to remove the adhesions on the spot, and inserted two IUDs to stop them re-forming. The irony of being put on contraception for two months as we tried desperately to conceive was not lost on us.

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We, and our doctors, thought that this was it – the missing piece of the jigsaw. We merrily and confidently prepared for our seventh transfer after the coils were removed, and it seemed to be a success – we had our first strong positive test result, and my HCG kept rising – but only for a week.

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Getting experimental

After our sixth miscarriage, both our IVF consultant and the miscarriage specialist agreed that we should consider surrogacy, as no one could work out why I keep miscarrying. We started looking at this option – and indeed still are, but we wanted to ensure that we had left no stone unturned before going down that route. That desire brought us to the door of a second miscarriage specialist, the only one in this country, as far as I know, who offers a more extended version of reproductive immunology testing. Reproductive immunology is very controversial, with many miscarriage specialists (including the first one we saw) believing that the immune system has nothing to do with reproduction and miscarriage. The HFEA has categorised immunology treatments as ‘red’ in their traffic light system. However, in the absence of any other explanation for our recurrent pregnancy losses, my husband and I believe that this is a route worth exploring. 

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The second specialist tested us, among other things, for Leukocyte Antibody Detection (LAD), which measures the levels of blocking antibodies in the mother’s blood cells to samples of white blood cells from the father. Lower levels of these blocking antibodies are associated with higher rates of miscarriage and implantation failure. I had low levels of these antibodies and the treatment, called Lymphocyte Immune Therapy (LIT) was our weirdest treatment yet. My husband had to go to the clinic in the morning to have seven vials of blood taken. The white blood cells were extracted from the sample and, later that afternoon, injected into the inside of both my forearms in an excruciatingly painful but mercifully short procedure.

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I was also tested for Killer-Cell Immunoglobulin-like Receptors (KIRs) – the science is complicated and I don’t really understand it, but I am missing three of them which can also increase the risk of implantation failure and miscarriage. The treatment for this was Neupogen, which was originally used to increase the production of white blood cells in the bone marrow, and is often given to chemotherapy patients.

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Still not pregnant, still a mystery

Sadly, despite all these diagnoses and treatments (including a plethora of more standard treatments that I haven’t mentioned), we are still no closer to bringing our baby home. We’re currently trying to figure out if it’s worth one more go before we turn to surrogacy, or if it’s a waste of an embryo to transfer it to me – would it be safer in the womb of a woman whose immune system doesn’t go into overdrive at the first sign of a foreign body, baby or not? We’re currently awaiting test results, in conversation with surrogacy agencies and, as always, trying to conceive naturally because you know, you always hear about ‘that couple’…

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