This is something I had to ask myself almost two years ago and if there’s one question that’s been put to me more than any other, it’s this one.

In recent months I’ve talked about our initial diagnosis, proposed treatment plan and next steps. However, I thought it might be helpful to share my thoughts on how I would approach additional NHS and private testing if I knew then what I know now.

More than half of cases of recurrent pregnancy loss will return normal results and often couples are told to try again while being monitored more closely in their next pregnancy. In our case, we took that advice, and I suppose you could say hindsight really is a valuable thing.

My experience of NHS recurrent miscarriage testing

My tests were carried out following my first loss, a late miscarriage at 16 weeks in June 2016. We spent time with our son after he was born and to us he was perfect; 10 tiny fingers, 10 tiny toes, beautiful skin and not a mark on him. How could we lose our precious boy when nothing appeared to be wrong?

I found the lack of answers following my tests and Harris’s postmortem so difficult to accept. Yes, I was healthy on paper, which statistically made a future pregnancy more likely, but how on earth was I supposed to process my thoughts and feelings around our loss when we were given no reason for the death of our child?

Our local NHS recurrent miscarriage clinic was sympathetic, but the only advice they could give us was to try again and at the time it felt like it was the best option. Part of me believed it would be healing for us, to be well into a healthy pregnancy by the end of that year. And as it happens I fell easily. But by Harris’s due date, 17th December 2016, I was already experiencing a third loss.

Between Christmas and New Year, while Jonathan and Cora were away spending time with family, I immersed myself in blogs and forums and studies. I read two books; Miscarriage: What Every Woman Needs to Know by Lesley Regan, and Is Your Body Baby Friendly? by Alan E. Beer. I needed to absorb as much information as I possibly could and formulate some kind of plan.

Initial private fertility testing

We decided to give ourselves a six-month break from trying to conceive and in that time I met with a nearby private fertility clinic in Scotland named GCRM. I was advised to have uterine Natural Killer (uNK) cell testing and we invested in parental karyotyping, something the NHS wouldn’t offer us unless a pregnancy had been lost due to a chromosomal issue.

The results of these tests were normal and after being advised to forget about any form of basic semen analysis or sperm DNA fragmentation testing because it was unlikely to be a factor (something I’ll come back to), I began exploring MTHFR. These letters had been popping up in my research and there are bloggers and experts out there that explain the gene and its function far better than me (see below resources), but in basic terms, an MTHFR gene mutation can lead to a loss in methylation function.

What’s important about this is that studies support a link between the mutations in the gene and pregnancy loss. There are currently 34 mutations in the MTHFR gene, which sits on chromosome 1, and I tested positive for one copy of MTHFR C677T, a result that was disregarded by the fertility clinic as a cause for concern as, here in the UK, it’s not recognised as being linked with recurrent loss. However, it’s a different story in the US and Australia and so I’ve since followed the advice for those with any type of MTHFR mutation; to take the natural form of folate, quit alcohol (as long as I’m trying to conceive anyway) and reduce caffeine intake. I’ve also made other lifestyle, dietary and environmental changes, many of which form part of basic fertility planning anyway.

I won’t go into further detail about MTHFR but if this is of interest the websites I follow include:

http://mthfr.net/ – Dr Ben Lynch, an expert on MTHFR gene mutations
https://www.mthfrsupport.com.au/ – a dedicated clinic that specialises in addressing health issues associated with MTHFR genetic polymorphisms and methylation issues
https://www.floliving.com/the-mthfr-gene-mutation-and-your-fertility/ – how an MTHFR mutation can impact on your fertility and what to do about it

Secondary private fertility testing

I wasn’t entirely convinced that we had found the root cause of our losses, or that we ever would, but for me having the gene mutation and some kind of plan to support it gave me hope for a future pregnancy.

Sadly, we went onto experience our fourth loss, this time due to a chromosomal issue. Because of this, we decided to invest in further testing, this time with Zita West in London. I underwent the Chicago tests, often referred to as level 2 (where NHS offer level 1) as they look in-depth at the immune system, and I tested positive for elevated NK cells and raised cytokine levels, both factors in recurrent pregnancy loss. I was also diagnosed with a PAI -1 gene mutation which, when linked with an MTHFR mutation, can present a clotting risk.

At this point, Jonathan tested positive for sperm DNA damage, and we approached a private clinic in Athens called Serum after hearing about their success in treating intrauterine infections, something I also tested positive for.

Finally, I had my GP refer me to Tommy’s National Centre for Miscarriage Research. I knew our visit to Tommy’s wouldn’t result in further testing although they did recognise my private test results and suggested a staged treatment plan to support our diagnosis, a treatment plan that my local NHS fertility centre and the professor I’m under the care of have now taken on board to increase our chances of a successful pregnancy.

So what would we do differently?

Had I known about the link between my gene mutations, I would have embarked upon the Chicago tests six months sooner, at the time of undergoing uNK cell testing. There are different schools of thought on this area, and I believe Tommy’s are in the early stages of conducting a trial, so there’s simply not enough evidence to support some of the findings. But I do know of women who are successfully having babies after undergoing treatment for elevated NK cells and raised cytokine levels.

Male factor infertility could be a cause in at least half of all recurrent miscarriage cases, something we weren’t aware of until after our fourth loss. Had we known this early on we would have paid for sperm DNA testing a year sooner. It’s such a simple test and we’ve seen that dietary changes, the right supplements and antibiotics treatment can support improvements. This is also something that Tommy’s are currently looking at and I believe they’re recruiting for a trial.

Ultimately, I believe that with the right knowledge, we could have saved ourselves a year of heartache. It’s not a long time in the realms of infertility but it accounts for half of our time.

What to request from the NHS

Here, I’ve listed the specific requests I would make following recurrent miscarriage testing, assuming a normal result.

1. Basic sperm analysis – this is a vital test that could support many couples. Male factor infertility is linked with recurrent pregnancy loss (source: ScienceDirect) and in our case, it wasn’t investigated until we were 18 months into our journey.
2. Hysteroscopy – the NHS wouldn’t offer me a hysteroscopy because I had a diagnosis by the time I asked and because I have a healthy child. However, some of the ladies I’ve met at a local fertility group have been offered one following recurrent loss so it’s worth finding out if it’s an option. I decided to invest in a private hysteroscopy with Serum because they have a good reputation for carrying out the procedure in partnership with their local hospital. My care was excellent, it was discovered that I had inflammation likely caused by my intrauterine infection, and much of the scar tissue that was found was removed. I was given antibiotics and serrapeptase to treat my problems so it was a worthwhile procedure for me.
3. Parental karyotyping – we were unable to have this test on the NHS until our fourth loss tested positive for a chromosomal issue, however, some NHS trusts may offer it following one or more losses.
4. ERPC (if testing of the pregnancy is offered) – if you’re experiencing a second or third miscarriage, testing of a pregnancy could offer some insight into why loss has occurred. I didn’t opt for an ERPC until my fourth loss and it’s the only time I was given a reason. Yes, there are risks associated with any procedure, but I felt that the benefits outweighed them and I would opt for an ERPC in future.
5. Referral to Tommy’s Miscarriage Clinic – while we met with Tommy’s and they supported us in our decision making, something I might have done if I could turn back time was see them following our third loss, not a year later. Many couples take part in trials in future pregnancies so they can be closely cared for while giving important information to Tommy’s to support their research. One couple I know successfully conceived two children following three losses after seeing Tommy’s clinic and participating in a trial throughout both pregnancies.

Private options to consider

Once the NHS options have been exhausted, here are some of the private tests that could be explored.

1. Infection screening – offered by Serum, this simple and cost-effective test gave me and Jonathan an opportunity to make drastic changes
2. Sperm DNA fragmentation testing – this was a major missing link in our tests and treatment plan and we didn’t explore it until we were 15 months into our secondary infertility journey. Many couples assume that if basic sperm tests are okay there’s no point in pursuing sperm DNA tests, but in our case, there was sperm DNA damage while the basic results were “normal”. Do both, if you can!
3. Chicago tests – my initial tests showed that I was positive for NK cells, however, I later tested negative after completing the protocol for an intrauterine infection. Repeating the test was costly and so I would complete infection screening before attempting this.

I can appreciate that this is a lengthy post with some information repeated from earlier entries, but what I’ve tried to do is share our journey through testing based on the results of our NHS recurrent miscarriage tests.

It’s not an exhaustive list of available NHS and private tests, and each journey is unique, but if at least one step we took plants a seed or backs up a plan, we may just help someone.

One final point to add is that I still have no idea what caused three out of our four losses. We believe it’s down to many factors and all we can do is follow our treatment plan and hope that the next baby makes it.

As always, if you have any questions or would like me to expand on any points, please comment below, send me an email or drop me a message on Instagram.

Thanks for reading.

Love,
Sarah x

Following on from my first blog where I shared my experience of secondary infertility and recurrent miscarriage, I’m expanding on my diagnosis in the hope that it might connect me with or help those in a similar situation. Perhaps you’ve had the NHS recurrent miscarriage tests and don’t know what steps to take next? Maybe you’ve been trying for some time and are looking for answers as to why you might be struggling to conceive?

Until very recently our case was ‘unexplained’. Our first son’s postmortem was incomplete due to the sample tissue being difficult to analyse and my initial test results revealed no underlying issues. Our karyotypes were normal and while I was diagnosed with an MTHFR gene mutation following our third loss it was explained to me that my single copy of the C677T mutation isn’t linked to recurrent miscarriage. It’s another matter in the US and Australia, something I’ll expand upon in a future blog, and so I do follow the fertility recommendations for those with the mutation.

Our first son’s postmortem was incomplete due to the sample tissue being difficult to analyse and my initial test results revealed no underlying issues

In August 2017 we lost our youngest son to trisomy 15, an extremely rare genetic disorder, and the only thing linking three out of four losses has been heartbeat detection. This led our consultant to repeat my thrombophilia screen with the aim of confirming an underlying clotting issue.

My results were normal, which was positive from his perspective, but I wasn’t content with the advice to take aspirin and try again. So I launched myself into a fairly intense period of private investigations in a quest to find answers. Surely there had to be more to my losses than “bad luck”?

Immune issues

In October 2017 I approached a clinic in London and given my history immune testing was recommended. A previous uterine biopsy showed that my Natural Killer (NK) cell activity was within a normal range, but I was keen to explore the blood tests. I had read Alan Beer’s book and there have been so many positive stories about women following the treatment protocols for immune-related issues and having successful pregnancies after years of failed attempts.

The investigations I had under the NHS fell under the bracket of ‘level 1’ testing and so with the private clinic we focused on ‘level 2’, otherwise known as the “Chicago tests”. These explore immune implications at a deeper level and revealed that I had elevated NK cells and raised cytokine levels, both factors in recurrent pregnancy loss.

Clotting issues

At the time of receiving the results for my NK assay, I was also diagnosed with a PAI -1 gene polymorphism, a mutation which when linked with my MTHFR C677T mutation presents a strong case for clotting.

Now, of course, we all have gene mutations of some kind, and some are active and inactive, but for me, this diagnosis came as a relief in some respects as it tied in with my NHS fertility clinic’s discovery of a ‘pattern’ linking most of our losses. I was content with the idea of moving forward with the treatment suggestion of aspirin on this basis and once my consultant reviewed my private results I was also offered heparin.

Hidden infection

While I was digesting my ‘level 2’ test results and proposed treatment plans, I approached another clinic, this time in Athens. The clinic specialises in hysteroscopies and they treat patients with a similar diagnosis to mine, so a detailed look at my womb with an internal camera seemed like a sensible next step. It would reveal any scarring following my four losses, one of which was a stillbirth in the second trimester and another involving an ERPC (Evacuation of Retained Products of Conception).

The clinic first asked me to consider a test called Hidden-C. Carried out by Locus Medicus in Athens, it would involve collecting and sending a sample of my menstrual fluid so it could be analysed. Part of me was screaming “WTAF” at the idea of it, but another could see that at a cost of $100 I had very little lose and a lot to gain. By this point in my journey, I had no shame in doing whatever needed to be done to find answers, even if it involved some slightly awkward sample gathering! The mooncup is a revelation to me by the way…

I had no shame in doing whatever needed to be done to find answers, even if it involved some slightly awkward sample gathering!

I tested positive for the infection, which was upsetting at the time, however, I’ve since learned that it’s extremely common. According to Locus Medicus there’s a “positive diagnosis for the presence of chlamydial infection in around 37% of samples investigated for infertility in the Greek and UK population”. It’s a very sensitive test and, in most cases, a course of strong antibiotics will help.

At this time my partner also tested positive for sperm DNA damage, another potential factor in recurrent loss, and so we each took the antibiotics to deal with the infection and damage. We were on a good supplement protocol but took steps to tweak them to better support egg and sperm health, further improve our diets (well balanced with the odd piece of chocolate and cake) and change our approach to exercise – an increase for Jonathan and a lighter approach for me as until that point I’d been giving it some!

When we go out to Athens in April we’ll find out whether the commitment we’ve made has helped.

Subclinical hypothyroidism

My thyroid panel was repeated and unfortunately, my Thyroid Stimulating Hormone (TSH) levels were raised. While at the upper end of normal for the average person at 4.69, they were above the normal range for a woman hoping to conceive and this resulted in a diagnosis of subclinical hypothyroidism.

From a fertility perspective and according to the advice I’ve received, TSH levels ideally need to be between 1-2.5, and the private clinic I’m dealing with would like me to get them as close to 1 as possible. My levels were 4 when I tested again recently and before starting medication, which at this time I’ve been on for six weeks. My thyroid panel was repeated again this week so I’ll hopefully see the levels fall very soon.

PCOS symptoms

I’ve had no less than 25 ultrasounds throughout my five pregnancies, the first of which was successful, and while I’ve complained of mild PCOS symptoms; irregular periods, weight gain, hair loss and oily skin, I’ve never had a PCOS diagnosis. At my last scan in December it was suggested that my ovaries were borderline polycystic, which doesn’t put me in the bracket for treatment according to our consultant, but I feel it’s important to work on this aspect of my health. Together with an expert in Chinese medicine, I’m slowly adapting my diet by decreasing sugar intake, reducing dairy and gluten, and trying to adopt a more relaxed approach to life. Not easy in an infertility setting!

During the scan, a possible fibroid was also detected and my lining was sub-endometrial, so a hysteroscopy is something I’m very keen to have while we’re in Athens. My hope is that a more detailed investigation will be the last piece of the puzzle whether it gives me more answers, addresses issues or simply confirms I’m a-okay in the womb department.

My hope is that a more detailed investigation will be the last piece of the puzzle

Ultimately, the results I’ve had and the work I’m doing to address my diagnosis is about having faith in my body and giving me the confidence I so desperately need to try again.

You can read more about our journey in my proposed treatment plan.

Love,
Sarah x

Welcome to my first blog; my baby loss and secondary infertility story and the inspiration for Bide & Bloom. It’s been hard to reflect upon and sum up my experiences and so I thought it simplest to start with where I am today.

Here and now

Today marks six months since our fourth consecutive loss. Since I had to undergo surgery to remove our baby. Since we said goodbye to a second son.

I’ve been finding it hard to cope lately, partly because I’ve been reflecting on our losses, on that empty, hollow and all too familiar feeling inside. But I’ve also felt hopeful because today marks the start of a new journey. A six-month plan to improve our health in readiness for another pregnancy. Another attempt following four very difficult farewells.

From where do we find the strength and the courage to try again?

But how do we do it? From where do we find the strength and the courage to try again? The weight of our experiences has truly hit me this week. Over the last year, I’ve put so much energy into fertility testing, interpreting results and creating plans. On the one hand, I feel determined, positive even. On the other, I feel grief-stricken, and my heart aches at the thought of having to go through this again. It’s been overwhelming and all-consuming.

I’m also approaching my last due date, which feels strangely significant, as it seems like we’re still a long way from giving our daughter a sibling.

Looking to the past

Welcoming Cora into the world was the most life-changing of experiences. It was April 2014 when I found out I was expecting and I was in my second trimester. Baby loss had touched our family so believe me when I say we knew how incredibly fortunate we were. Less than six months later we were holding our daughter and it was a whirlwind year, to say the least, one of the most challenging and rewarding times, and I’m eternally grateful for those happy memories and for our miracle baby.

I’m eternally grateful for those happy memories and for our miracle baby

Fast forward to June 2016 and I was 16 weeks pregnant with our second child. Waiting for a private scan, I was filled with hope and fear. Hoping to give our 18-month-old her ‘big sister’ tee when we got home (I still hold onto it) but fearing the worst given some of the symptoms I was experiencing.

The sonographer asked if I had any gut feelings. “Boy or girl?”

My only gut feeling was that something was very, very wrong and I just needed to know that our baby was okay.

But as I watched the screen it was apparent that our baby wasn’t okay. The little arms and legs we’d seen wriggling around just a few short weeks before seemed lifeless. I stared at the image for what felt like an eternity, at the still and delicate curve of my baby’s back, praying to something, someone, somewhere for that flicker. A hand covered mine, a kind gesture, and one that no longer needs the words “I’m sorry, I can’t find a heartbeat.”

It’s quite difficult for me to describe how I felt in that moment. The shock and the grief and the fear were competing with each other for my attention. The shock that my body had failed. The grief that my baby had died. The fear that I’d have to give birth. Nothing could bring us back from this.

I delivered our beautiful little boy, Harris, on Thursday 30th June 2016. His special day.

Looking to the future

In the months that followed we received our initial test results and, sadly, they offered no explanation as to why we lost Harris.

There were fewer answers following our second and third losses and, while we underwent some investigations at a local private clinic, which resulted in an MTHFR gene mutation being uncovered, my diagnosis was ‘unexplained secondary infertility and recurrent miscarriage’.

Tired of hearing the same things over and over; “bad luck”, “no pattern”, “try again”, we embarked upon more private tests following a fourth loss, this time with clinics in London and Athens. It’s been expensive and exhausting. But every appointment, every scan, every test, has been worthwhile. While we still have a trip to Athens and final investigations to arrange, I know I’ve done everything I possibly can at this point in time.

I know I’ve done everything I possibly can at this point in time

Until we have a firm and final treatment plan, my aim is to look after and listen to my body and mind so I can keep being the best mum I can be to Cora, and to give ourselves the best chance of one day growing our family.

Meanwhile, my hope for Bide & Bloom is that it can become a place for people to find positive information and, to some extent, the strength to carry on. As while our journey has been a difficult one, we do have a chance. There are of course no guarantees for the future but in sharing the process we’ve gone through, and the various tests we’ve had, someone might just gain something from our experience of secondary infertility and recurrent loss.

Thanks for reading.

Love,
Sarah x