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Mental health Our story

Maternal Mental Health Week – holding on and letting go

May 3, 2019

My next blog for Maternal Mental Health Week takes us beyond my first experience of motherhoodmy diagnosis of PND shortly after my daughter was born, and my recent history of secondary infertility and recurrent miscarriage.

I created this website in early 2018 as a way of journaling about our fertility story as well as supporting myself and connecting with others during my testing and treatment. You can find earlier blogs about my testing, treatment and planning in the archives and so I’ll avoid repeating myself for those of you who are familiar with the hurdles we’ve faced over the last three years.

Today, I want to use this space to talk about the last nine months and about letting go of guilt and leaning into fear.

Holding on and letting go

Since deciding to put the breaks on trying to conceive last summer, following a fifth pregnancy loss, guilt and fear are the emotions I’ve grappled with most. The grieving process can be complex, said to be a fine balance of holding on and letting go, something I’m finally making sense of.

I no longer feel responsible for our losses, I’ve created space here and in my life and in my heart for all of our babies, and I’ve found a way to delicately mother Cora while navigating the loss of her baby brother. All of these things came with their own unique challenges and it’s taken time for me to make peace with what’s happened to us over the last few years. Of course, I still have down days, but they’re fewer. Processing guilt and learning about fear has helped.

Recently I realised that all I’ve ever wanted since June 2016 is to have Harris back, and as much as I love him and wish life was different, I can’t change it. But I can change how I respond to our situation. I need to create space for new things, something I don’t think I’ve been emotionally or mentally ready for in all the time we’ve continued to try. That was very hard for me to admit to myself for a long time.

Given our struggles, it was important for us first to take time out to see how life might look and feel without trying, to almost test the idea of stopping altogether and to give my body and mind the chance to heal, and I now see that I’d placed unrealistically high expectations of myself to recover quickly from each loss – something those around us were gently trying to let me know – and I needed to be kind to myself.

I was in a constant state of stress – in fight or flight mode – and had been for the best part of two years.

When we first took the decision to stop trying, I felt so much relief. We told our closest family and friends that we had come to the end of the road (for now), I wrote a blog to process my feelings around it (as writing is definitely my therapy!), then turned my attention back to life and work. Business as usual. Or so I thought…I had just made one of the most difficult choices of my life. And deciding to stop trying to grow our family felt so unnatural – the complete opposite of our hopes and dreams and the life we had imagined for ourselves – and the grief eventually caught up with me again. Only this time it impacted on me physically. And after learning about how loss grief can manifest in the body I don’t doubt that it had some impact on how I was feeling – guilt and fear and the overwhelm they bring meant I was in a constant state of stress – in fight or flight mode – and had been for the best part of two years.

So, over time, I’ve had to learn to listen to my body and mind and give them what they need. Following NHS physiotherapy and rheumatology appointments I was eventually given the diagnosis of polyarthralgia – but all that really does is explain some of my symptoms – pain in multiple joints. Fortunately, I’ve had private support in the form of private physiotherapy, osteopathy and reflexology, and the focus has been on managing those symptoms rather than trying to get to a root cause. Sometimes, there isn’t one particular thing that results in pain in the body and, while that left me in a state of limbo for a while, it’s also given me the chance to focus on other things such as my mental health.

Allowing ourselves to ask for and accept support is one of the truest forms of self-love.

To cut a long story short, we’ve learned a lot about our fertility over the last few years, and feel ready to open our hearts back up to the possibility of growing our family again. Despite being in a challenging place physically, I feel emotionally and mentally well. Writing and talking and sharing has helped me make sense of the big stuff and make the tough calls. But that doesn’t mean I’ll be sharing the intimate details as we find the courage to try again – I’m learning to create better boundaries – but Maternal Mental Health Week has given me an opportunity to read other stories and it’s inspired me to share my own story again and invite support from the fertility community. I had a really powerful conversation with a close friend yesterday and we touched on the idea of receiving help and how difficult it can be. Allowing ourselves to ask for and accept support is one of the truest forms of self-love – and it’s something I’m ready for.

I’m also ready to put all of my fertility knowledge into action now we have the right team of people around us and feel safe and supported. Our local NHS fertility clinic has so much faith in us, my EFT coach is always on hand to offer support, my reflexologist is the absolute bee’s knees, and we have a treatment plan for pregnancy that we’ve never had the opportunity to even try. You see, we found out so much between our fourth and fifth loss – in that time we decided to invest in private testing, leaving no stone unturned – but sadly our last pregnancy ended within days and I didn’t get the chance to even start treatment. Looking back, I think felt like I’d failed at the first hurdle. And it was all too much after the time and energy (not to mention money) we’d invested.

But if we don’t try again, I’ll always wonder what if. And what ifs have been at the root of much of my guilt and fear. What if I’d done X, Y and Z…would Harris be alive? What if we knew what we knew now…would we have lost so many babies? What if we can’t grow our family…how will I accept that? Well, this is the question we have no answer to. But I do know that I’ll never accept it if I don’t give my treatment plan a chance.

It will be some time before we take those bold steps, but it feels good to be in a better place, a kinder and gentler one, where I can hold onto the memories that serve me and let go of the unhelpful thoughts and feelings that don’t.

Love,
Sarah x

Mental health Our story

Maternal Mental Health Week – reflections on PND

May 1, 2019

Today, as part of Maternal Mental Health Week, I shared my postnatal depression (PND) story with Isabella & Us. I touched on why I’m so mindful of my mental health and my experiences of talk therapy, as well as various coping mechanisms, which haven’t always been healthy.

Sarah Robertson PND

Jonathan and I knew that becoming parents was going to be a challenge, but we hadn’t quite appreciated just how anxious and fragile I was during and after pregnancy, and together we’ve had to overcome many hurdles.

Feelings of not being good enough, having no grip on reality and being unable to control my emotions left me in a dark place. But talk therapy brought me back from damaging thinking patterns and taught me the importance of self-care. Opening up has helped me to stay afloat, it’s nurtured my body and mind, and offered me the tools to support myself.

I’m no expert, but I’m passionate about delivering the message that it’s okay not to be okay. There’s always a way through. And curiously PND was both a blessing and a curse and the process of overcoming depression healed me in ways I never thought possible.

I was nervous about sharing my experience of PND but it’s been helpful to look back on the last four years. Talking is therapy, and writing and sharing can be therapy too!

Read more about my experience of and recovery from PND on the Isabella & Us blog.

Love,
Sarah x

Mental health Our story

Maternal Mental Health Week – my motherhood

April 29, 2019

For the first day of Maternal Mental Health Week, I rewind to the time we decided to start a family.

This comes with a trigger warning as I do talk about our experience of an uncomplicated pregnancy as well as our experience of secondary infertility and recurrent loss. This can be hard to read when you’ve faced fertility struggles of any kind, but I think it’s important for me to share the ups and the downs. Sometimes joy and pain go hand in hand.

Sarah Robertson - maternal mental health

Starting our family

It was April 2014 and our wedding plans were underway. But we weren’t enjoying that side of things and I was beginning to feel the pressure. My partner Jonathan suggested we focus on trying for a baby instead. And it felt like such a relief, a simple (really?) alternative.

Fertility was something we thought could be a challenge for us. But for whatever reason we were undeterred. We decided to start trying, see where it took us and didn’t really talk about the obstacles.

We just felt that growing our family was a good idea and something to focus on sooner rather than later.

In previous years I’d undergone investigations after facing hormonal imbalances since my teens. I suppose you could say I had a ‘funny feeling’ things might not go our way. But we weren’t overly worried. We just felt that growing our family was a good idea and something to focus on sooner rather than later.

A day or so after discussing our family plans, it occurred to me that I’d experienced an incredibly long cycle. Much longer than usual. I didn’t say much to Jonathan but spent the next few days observing how I felt and initially put it down to thinking about babies and becoming more attuned to my fertility. Then a few days later, I started to feel movement, and we joked that the immaculate conception had taken place during our ‘family planning’ chat the week before.

When two became three

Well, there they were. Two lines. I think I did four tests just to be sure then rushed Jonathan out to the pharmacy to grab a digital test just to see the word ‘pregnant’. I think it might have been the most shocked, excited, petrified and grateful I’d ever felt in my life.

My thoughts immediately went to the safety of the baby and the need for an ultrasound to determine how far along I was. Was I weeks or months into the pregnancy? I had no clue. We would have to wait a week for an NHS appointment so decided to book privately for peace of mind. And the scan the next day couldn’t have been more unbelievable.

I was 15 weeks along, watching a moving, kicking baby. We were a family of three.

It was then that we decided to speak to those closest to us, especially the family and friends who had been experiencing fertility struggles. It was important to me that they heard the news from us first, and that we follow their lead in terms of keeping in touch and seeing each other if they were comfortable with that.

Fast forward five years and I often wonder how and why I took that approach. There were so many aspects of pregnancy with my daughter that I took for granted. But not once did I wish to showcase my pregnancy regularly on social media. And while I don’t judge those who do, for me it felt like it must be a painful thing to have to see if you’re experiencing fertility struggles or baby loss, and those struggles were very close to home within my family and among friends. I didn’t want to stir sadness in anyone. And it meant keeping a little of the joy to myself, something I think we forget to do in this digital world, so it was no bad thing.

Our experiences of loss

I often wonder if my views related in some way to what the future held for us. Maybe I knew I would experience baby loss and fertility struggles someday? Who knows.

But when we lost our second pregnancy, in the summer of 2016, it came as a total shock. We were beyond the apparent safe zone, almost halfway through the pregnancy, when my son was born far too soon. When we lost Harris, I was shown the same love and care that I had always attempted to show others in times of difficulty, even if I never quite got the words or actions right back then, and with the losses that followed the support from the majority of our close family and friends remained constant.

Everyone’s take on these experiences will be different but I felt a strong bond with my son, encouraged by the midwife who helped to deliver him.

Between  2016 and 2018 we lost five pregnancies; one late miscarriage, two early miscarriages and two chemical pregnancies. Everyone’s take on these experiences will be different but I felt a strong bond with my son, encouraged by the midwife who helped to deliver him, and I felt connections with each of my subsequent pregnancies, one of which was another son, confirmed through genetic testing.

Finding the joy in between

Today I want to focus on three positive aspects and the things that have helped me cope with loss and honour my son while continuing to parent my daughter. Because this is my experience of motherhood so far.

  1. With regular counselling, journalling and EFT (tapping), I’ve found the capacity to find joy in between the hard times. It’s not always easy, but with practice it’s possible.
  2. Discovering gratitude has been an unexpected side-effect of loss. While I very much want to grow my family, I’m also thankful for the life I have, although accepting that my fate might not change still involves some daily work.
  3. I strongly believe that what’s for me won’t go by me, and while I hope that our fate might change, I understand that there isn’t always a happy ending. Or not necessarily what we think our happy ending might be.

In learning to mother the child we got to take home, and in navigating life after the loss of the babies we had to leave behind, the following words have always stuck with me: “the only way out is through”. To me, they are a constant reminder to ‘do the work’. Not in a blunt or harsh way, but to simply keep going at your own pace until you see that there are still moments to be thankful for if you look closely enough.

Tomorrow I hope to share more about my early experiences of motherhood, specifically postnatal depression.

If you’d like to reach out or add your own thoughts do comment or share below or over on Instagram.

Love,
Sarah x

Baby loss Our story

When is enough, enough?

August 31, 2018

When is enough, enough?

In recent weeks I’ve got to thinking about where I am on our ‘journey’ and how important it is for me to accept that it could end this year. It’s been an emotional time and so yesterday, for the sake of my mental health, Jonathan and I made the decision to press pause.

While our experiences of secondary infertility and recurrent loss have taken place over a relatively short period of time, the last 26 months have seen us experience back to back losses and anniversaries. And I’ve gotten so attached to each of my pregnancies. It’s in my nature to make connections with people and try and build relationships and it’s no different with the little lives that began inside me. And so when those pregnancies end it’s devastating. So devastating in fact that I don’t know if I’ll ever be able to articulate precisely how it feels to see two lines then one, heartbeats then stillness, life then death. Harris was a wriggly little baby, the image of his big sister in his scans, and then he was gone. I believe it was Jamie Anderson that said “grief is just love with no place to go” and I honestly feel that way at times. So full of love and yet so pained because it’s trapped inside.

Poor Cora is smothered beyond belief and I’m beginning to fear losing her, which isn’t healthy. Added to this her recent fascination with what it means to be dead and I’m having to tread quite carefully, for my own benefit as well as hers. Cora understands now that mummy had a baby boy in her tummy called Harris and that he died, we made the conscious decision to remember him and involve her in that. But when she asked “am I going to die too?” it brought so many emotions to the surface. Feelings that I hadn’t been aware of and so have never really tended to. You can read more about her curious nature and my approach in my blog: helping children understand baby loss.

Something that our experiences have got me thinking about is the bigger picture, of our whole lives, and the other things we wish for. And being completely honest with myself, I don’t think I have it in me to continue down this path. I’m pretty clear on my boundaries, on what’s healthy for me personally; both mentally and physically.

But until I know for certain, it’s time to be kind and gentle with ourselves, to focus on the family we’re lucky to have, the beautiful home we’ve created, the successful business we’ve grown, and to count our blessings. Even the little ones, our stars, who have taught us so much about ourselves.

I’m conscious that for some this might seem easy to say when I have a living child but, for me, it’s incredibly difficult coming to terms with the fact my family looks nothing like I thought it would. My grief isn’t limited to the little ones we’ve lost. I also grieve for the future that will never be.

That’s not to say my future won’t be a bright and happy one. I know it can be. It’ll just be a different kind of bright and happy.

Love,
Sarah x

Our story

My recurrent miscarriage tests are normal. What next?

June 17, 2018

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

Our story Secondary infertility

Does secondary infertility have a place?

June 6, 2018

A few weeks ago I viewed a short but impactful video, a talk claiming that those experiencing secondary infertility don’t have a place at fertility events. So powerful was the effect of this talk that it silenced me. For three whole weeks.

So powerful was the effect of this talk that it silenced me. For three whole weeks.

Am I not worthy of growing my family? Am I selfish for trying to grow it because I have a daughter? Am I less important because I’m coping with secondary infertility? These are the questions I’ve been asking myself whilst simultaneously trying to find the courage to embark on a sixth pregnancy.

Throughout May I’ve ummed and ahhed about discontinuing my Instagram account and this blog because, initially, I created it so I could be part of the trying to conceive community. I wanted to share my experiences and safely open up about my thoughts and feelings, which I often harbour for fear of upsetting others. This talk I watched, this misinformed diatribe, confirmed those fears.

Why is this so important to me?

I wanted to write about this weeks ago but I simply couldn’t find the words. I didn’t know quite how to respond and emotions were running high. What’s brought me to write about it now is going back through my Instagram messages and emails.

Since its launch in February, this blog has encouraged women to reach out to me. And it feels good to be able to answer their questions. Yes, it feels positive to have opened up about my losses, my recurrent miscarriage tests and my treatment plan for a future pregnancy. But more than that, it feels powerful to be connecting with those experiencing the same thoughts and feelings and making similar decisions. Some are coping with baby loss, others are trying to conceive for the first time, many are exploring testing and treatment options, and some are going through IVF. While I would never be foolish enough to compare my fertility journey to that of a couple trying for their first child, does my fertility status mean I can’t be there for them? Does it mean they can’t be there for me?

I refuse to let a misguided talk reduce the pain I’ve felt while trying to grow my family. Hope and fear, love and pain, happiness and sadness. The ups and downs of this journey are what unites us. They help us to start conversations. They help us to give people a voice. They help us to build a community.

Hope and fear, love and pain, happiness and sadness. The ups and downs of this journey are what unites us.

So let’s not tear that community down because some of us happen to have had one or more successful pregnancies. Behind those pregnancies are couples that may have experienced extreme heartache to get there and may be in a position to support those on the journey to parenthood for the first time.

Does secondary infertility matter?

Do I think it matters? Should there be a label? In my view, yes and yes. It’s a term that I’ve come to embrace because at the end of 2016, after coping with recurrent loss, I felt like I had nowhere to turn. Then in discussing my losses online, I came across the words ‘secondary infertility’. And those words helped me find a space where I felt safe enough to open up and eventually connect with women and men experiencing all kinds of fertility struggles. This label was part of a journey that brought us to clinics, that helped us arrange tests and finally make plans for a future pregnancy.

As I approach Harris’s second birthday I’m feeling raw and emotional. I want to honour that emotion. I wish to honour his memory. At the same time, I feel more grateful for my daughter than I can explain. And yet I still want to grow my family. I still want to give Cora a baby brother or sister. It’s a mixed bag of emotions and there’s no shame in that. There’s no shame in secondary infertility.

So I’m waving goodbye to the guilt that I’ve already worked so hard to relieve myself of, and I’ll continue to be there for others, just as I hope they can be there for me.

Love,
Sarah x

Fertility treatment Our story

Our next steps

May 9, 2018

I can’t believe it’s been two months since my last post. Things have been incredibly busy for us on the fertility planning and testing front but, here we are, on the “other side” (of that part of the journey anyway) with a firm and final treatment plan.

It feels good to have some understanding of what might have happened over the last 22 months. The multiple losses we’ve experienced following an uncomplicated first pregnancy and birth is something even the professionals have struggled to make sense of. And having no real idea of how and why we were experiencing secondary infertility and recurrent miscarriage has put an incredible amount of pressure on us lately. Sadly, we’ll never know the exact cause of each of our losses. Even our last pregnancy, where we lost a son who tested positive for chromosomal problems, could have ended when it did due to underlying clotting issues. The unknown is something we’ve simply learned to live with, and it’s something I’ll have to learn to cope with in a future pregnancy should we be successful in conceiving again.

What we do have, which is positive, is a fairly good picture of our fertile health over the last 6-9 months. Clear improvements have been made, we’ve reversed some problems and I now have a firm and final treatment plan for pregnancy, which gives us hope that we’ll grow our family someday. I genuinely believe this is the best we could have hoped for after a series of complicated investigations.

Final diagnosis

So, these are my final results for which I’m having treatment (you may wish to read my initial diagnosis and my proposed treatment plan for a ‘little’ more background info):

  • Subclinical hypothyroidism
  • Endometritis – inflammation of the womb discovered during hysteroscopy, linked to hidden infection (see my initial diagnosis)
  • Scar tissue – discovered and removed during hysteroscopy
  • PAI-1 gene mutation – on its own this presents a clotting risk and when paired with my MTHFR (C677T – heterozygous) mutation the risk increases

I had also been diagnosed with immune issues (elevated NK cells and raised cytokine levels) last year, which I’ve since reversed, meaning I no longer need immunotherapy. This has come as a huge relief because I instinctively felt the treatment wasn’t right for me. I can appreciate that it’s helped some women conceive and carry babies to term but I had also read about others no longer needing it after making lifestyle changes or addressing other issues. I also have fewer PCOS symptoms, which I feel has been supported by Chinese medicine, something I was sceptical about, but which has helped me in many ways, and so I plan to write about my experience of it.

Six months ago sperm DNA fragmentation was also a factor and Jonathan’s results showed that there was 29% damage. The advice given to us at the time was that this ideally needed to be below 15%, though it’s possible to avoid ICSI IVF (previously recommended to us by two private clinics) if the damage is below 25%. This was a concern for us as finances aside, I had more or less decided that IVF wasn’t an option for me, not at this time anyway. It’s a completely new avenue, with its own emotional and physical demands, and I feel I’ve just about reached my limit with secondary infertility and recurrent loss while trying to conceive naturally.

The good news is that, with a protocol of antibiotics, as well as dietary and lifestyle changes, Jonathan reduced the damage to 8%. I’m still amazed and the challenge now is of course to maintain that result. Going forward, he’ll continue with his male prenatal and 200mg of ubiquinol each day. He recently stopped taking omega 3 supplements as we now get enough from our diet, but otherwise, it’s just a matter of keeping up with eating well and exercising regularly. And I think it’s really important to highlight here the benefits to us as a family of improving our health. We were never unhealthy, but we’ve made some significant lifestyle changes, which have become new habits. To me, those are things we need to hold onto, no matter what the future brings.

Treatment plan

To support my final diagnosis, this is my agreed treatment plan:

  • Continue with thyroxine before and during pregnancy and regularly monitor Thyroid Stimulating Hormone (TSH) levels
  • Take antibiotics to treat endometritis (10-day course completed following hysteroscopy)
  • Take serrapeptase for two months following hysteroscopy to help break down remaining scar tissue
  • Start antibiotics (15-day course) from positive pregnancy test to address potential inflammation issues, which can be caused by endometritis and hidden infection
  • Start prednisolone from positive pregnancy test to address potential inflammation and immune issues
  • Start aspirin from a positive pregnancy test to address clotting risk
  • Start heparin injections after 4/5 week scan to address clotting risk

Previously, it had been suggested that progesterone might be of benefit, however, I’m a big believer in getting proof of the need for any kind of treatment, so I had a progesterone test done last week. My levels are high and the length of my luteal phase has improved, as has my cycle in general, so this won’t form part of my plan.

What’s next for us?

While we’ve been encouraged to try again from a medical perspective, emotionally it’s just not the right time. We’ve had two very trying summers, experiencing losses and coping with due dates and anniversaries, so plan to stick to our plans for a guaranteed summer of fun. I really want us to connect again as a family and enjoy what we have.

We’ll continue working on our health and nutritional needs, and I’ll be keeping up with the Chinese medicine and reflexology to support my cycle, something I’ll touch on in a series of blog posts covering each part of my diagnosis. I feel I can confidently share the support I’ve been getting now that I have a clearer idea of where I’ve been, where I am and where I’m going.

Meanwhile, I’m enjoying finding time for me and a little self-care.

Love,
Sarah x

Fertility treatment Our story

My proposed treatment plan

March 15, 2018

In recovering from our losses and since my initial diagnosis, we’ve had a lot to juggle and consider.

Many women have undergone treatment for immune and clotting factors, and couples have addressed the various health issues my partner and I are tackling, but it still feels like we have a steep mountain to climb before we can consider another pregnancy.

And so the next step, after our visit to a private clinic in Athens (and assuming we get the all clear!) will be for me to follow my NHS treatment plan to treat subclinical hypothyroidism and clotting issues:

  • Continue with thyroxine before and during pregnancy and regularly monitor Thyroid Stimulating Hormone (TSH) levels
  • Take aspirin from positive pregnancy test (this will be a long way away with no plans to try again in the near future)
  • Start heparin injections after 4/5 week scan to detect the location of the pregnancy

My private treatment plan is more aggressive and involves addressing immune issues and support for the hidden infection that was found in my womb. It’s a plan I’m exploring in more detail before fully committing to it:

  • Intravenous immunoglobulin from ovulation
  • Progesterone from a positive pregnancy test
  • Steroids from a positive pregnancy test
  • Antibiotics during the first trimester

While I appreciate that many successful pregnancies have resulted from a protocol like this, I’m conscious that it’s a lot of medication. Together with my PCOS symptoms and thyroid issues, it’s been hard for me to get my head around.

I also have my daughter to consider. She is the centre of our world and although we want to grow our family she must come first. I have to be in the right frame of mind to embark on treatment while being the best mother I can be to Cora, and that means accepting that plans for a future pregnancy might need to be put on hold.

I have to be in the right frame of mind to embark on treatment while being the best mother I can be to Cora

We made the recent decision to give ourselves at least another 6 months to prepare and ensure we’re in the best health, both physically and mentally, and in that time we want to have a fantastic spring and summer with our girl. We have the opportunity to work abroad in August and holiday with family in September and we had initially disregarded the idea because “what if I’m pregnant?” But we can’t put our lives on hold and say no to new experiences and opportunities to create memories.

There’s a lot we can do in the meantime to continue on our fertility journey; April will be a busy month with travel and digesting more test results, May will no doubt be taken up with adjusting plans and supplements, and June, July and August will be hard for us with our son’s birthdays and other babies’ due dates. There will also be a lot of time dedicated to talk therapy and mentally preparing myself for the next steps.

June, July and August will be hard for us with our son’s birthdays and other babies’ due dates

While we work out the finer details, we’re going to keep being kind to ourselves, and put our trust in those who are helping us; our fantastic GP, friendly practice nurse, NHS fertility clinic and our private clinic. Not to mention the Chinese medicine fertility expert I’m working with over the coming months. Chinese medicine is something that’s very new to me and it’s exciting in some ways. So more on that later as I found my diagnosis interesting and would love to share it with you soon.

Hopefully, some of this has been helpful. And I’d welcome any comments or questions or suggestions for areas you’d like me to expand on.

Love,
Sarah x

Our story

My initial diagnosis

March 15, 2018

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

Our story

My first blog

March 1, 2018

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