Recurrent miscarriage, it affects everything.

According to Tommy’s, a leading UK charity that funds research into miscarriage, stillbirth and premature birth, 1 in every 100 women in the UK will experience recurrent miscarriage.

What this means for my wife and I, is that (as far as we know) we’re the only couple within our extended families and network of friends to suffer recurrent miscarriage. Although the statistic makes recurrent miscarriage sound fairly common, it really isn’t commonly understood and it is hard for those affected to come to terms with. That, for me, is why it affects everything.

Spoiler alert.

Louise and I still haven’t had the joy of conceiving a baby. This is very much a snapshot of where we are in July-18, more than five years down the road of trying to start a family.

I’ve read and listened to so many stories about fertility issues to help develop my understanding of recurrent miscarriage, and it has been on my mind to share some thoughts in the hope that it helps someone in some way. These are my independent thoughts and feelings about the situation from my perspective.

Louise and I talk about how recurrent miscarriage has affected our lives, we are always there for each other. Even still, I can’t even begin to imagine the emotions that Louise has felt, despite our closeness. Such depths of sadness. I am so unbelievably proud and inspired by her resilience.

Three Setbacks

The first miscarriage, and the last, hit us the hardest. But we’ve had lots of heartache and emotions to deal with between then and now. Our miscarriages have always occurred between 6–8 weeks, and it’s happened to us five times.

Our first pregnancy came after a year of trying. Louise had some bleeding and our local midwife got us booked in for a scan at 8 weeks.

The ultrasound confirmed our worst fears and it was devastating. Only a few days earlier we were talking names and things we would need to do to the bedroom. We were really excited, and had absolutely no thought in our mind that something might go wrong after that longed for positive test.

We got home after the scan absolutely numb and empty. We went straight to bed. When the tears stopped we watched all three Shrek films in one sitting, we didn’t know what to do with ourselves, clearly.

You turn to Google, and NHS FAQ’s about miscarriage to try and find some hope to help manage all the emotions we were both feeling, we were grieving.

We discovered that 1 in 4 women have a miscarriage, and that many women go on to have healthy babies. It is very common, so we tried not to be discouraged. We wanted to have a family, so we thought we would take our time and try again when we were both ready. We hoped we wouldn’t have to go through this three times as the NHS states as the minimum requirement for further investigations. Fingers crossed.

But we did have to reach that NHS milestone, and the investigations confirmed we are both perfectly healthy, no genetic issues, it is what we expected and feared, absolutely no explanation for why it keeps happening.

You don’t really expect doctors to have no answer, and that’s where it starts, for us, and for all our family and friends. What do you say?

Friends

After the first miscarriage, we told our families and some friends. I called my folks, broke down into tears, and decided to let my close friends know over Whatsapp, I didn’t want to have to go through speaking about it again.

After the next couple of miscarriages we told our families, but personally I talked less about it to our different friendship groups. I really don’t know why, there is no rationale as to why I did that, but we are scattered all over the UK, so when you do see your mates, you want to have a few drinks and a laugh, and it never felt like an appropriate time to discuss our heartache.

We’re all of a similar age, most of us were likely to have been trying to have a baby for some time with our partners, and it’s maybe not happened yet, or other friends weren’t quite at that stage but starting to talk about wanting kids. I didn’t really want to discuss my growing fears, that we might not be able to conceive a child at all. Let’s talk about anything else please.

We’re now further down the road than we were back in 2013/14, and a lot has changed, the lion’s share of our friends have toddlers and/or babies now. I think we’re doing incredibly well so far, embracing the joy and happiness of our friends, despite our own sadness.

However, when you’re suffering from recurrent miscarriage it does affect everything.

Our friends that have young children are in the most joyous bubble, and these gorgeous cute little additions to their lives are their world, rightly so, and as a consequence our interactions have developed around a new set of circumstances.

Over the last few years I feel like we’ve developed a mode to get through these new social circumstances, it can be difficult, we take part in the baby conversations, we talk about our nephews, and we try to fit in.

I definitely don’t want to amplify the recurrent miscarriage void by allowing it to get in the way of the friendships that we value.

It’s common human nature to avoid something that can make you feel upset or fearful, so sometimes it requires a concerted effort dependent on where your heads at, other times less so, and I hope this becomes easier over time, for both our friends and us.

Social media

My Facebook feed is full of people with babies. My colleagues, friends, and friends of friends seem to be knocking babies out for fun. I actually develop digital products for kids, a great job that I love, but there is no escaping the social media toddler train that is your thirties.

For the last few years Louise and I have grieved the loss of a pregnancy at least once or twice a year, it wears you down, and leaves you low on emotional reserves. You’re often sad, deeply frustrated, angry, and the emotional consequences of recurrent miscarriage can hit you when you’re not expecting it.

It takes a lot of resilience to manage how this reinforces your own situation. Facebook could have done much better with third parties exploiting our data on their platform to influence political outcomes, but credit where it’s due, they nailed it with the snooze a user for 30 days feature. Cheers.

Happy holidays…

I was in Mallorca for a family holiday in 2017, I was genuinely excited about spending the holiday with my family, and in particular my nephew, he brings so much joy to our family, and these moments are really special.

I had felt like I really needed that holiday, I had this sense that at some point all my emotions were just going to pour out of me. For the best part of a year I had tried to be a rock for Louise, not let my sadness get in the way of work, channelling grief into being productive, always having a project on, compartmentalising.

I really struggled on this holiday, why? I was away with all my family, everyone I love and care about, and I found the whole experience really uncomfortable.

The resort was full of young families and grandparents, reflecting where we should be in our lives. It felt like the resort was designed entirely around serving peak family happiness, I didn’t see it coming.

I didn’t feel like I was in the present for the entire holiday, I couldn’t enjoy anything, the entire experience just made me feel like absolute shit. I didn’t want to speak about how I felt to my family, because I thought it would ruin their holiday, so you just swallow it, try to manage your anxiety, you sacrifice your own mental health. Why?

Being in a conventional family

This is the thing about the impact of recurrent miscarriage for you and your family. Both my wife and I have parents that have had long marriages, children and grandchildren. Recurrent miscarriage imbalances the conventional family dynamic, it creates an odd glitch, and no-one knows quite how to talk about it or deal with it.

I sometimes struggle with intense family time, and I really do love my family, I enjoy spending time with my nephews, watching them grow, and we have lots of fun together. However, the wider family dynamic feels broken, like it will never be resolved unless we have kids in the future, to fit in, so it works as it should.

We all just try and get on with it, and it’s really hard, there’s a void in all our lives. It is a difficult subject to bring up in conversation, particularly when you’re aware it will likely lead to everyone getting upset, but at the same time, how can your family be empathetic if you’re just giving off a vibe that all is well. It’s a difficult problem to discuss, there’s no obvious medical solution to build a shared hope on, we’re better off not mentioning it…

Christmas is probably the hardest time of the year, there’s a theme developing here… recurrent miscarriage really sucks the joy out of events where it’s the norm to be happy or merry with your family.

Why? Anyone who’s suffered miscarriage knows that this is the time when you are likely to reflect on your sadness. It’s Christmas 2017, we should have at least three kids opening presents, that’s hard, I’m sitting there with a glass of prosecco trying not to ball my eyes out.

Hope

The waiting room of a fertility clinic can be one of the saddest places where nobody ever wants to find themselves, typically located right by maternity wards full of newborn babies. However, once you have overcome that emotional slap around the chops on arrival, and you meet a leading professor in the field of miscarriage, in a room covered in “Thank you” cards, you start to feel more optimistic about your chances.

After our first three miscarriages, and the standard tests at our local hospital, there was hope in Professor Quenby, a consultant obstetrician based at University Hospital in Coventry. Professor Quenby’s work is supported by Tommy’s charity, funding research into recurrent miscarriage. Professor Quenby was offering a number of different medical trials to support women who have suffered three or more miscarriages.

We became cautiously optimistic after our first encounter, despite all the heartache we had suffered so far, we decided to take part in our first trial. This trial involved scratching the womb, as it is believed this might help prevent miscarriage. This is a procedure that has been used for IVF patients. It is contested if this even works, and the results of the trial aren’t yet published.

It either didn’t work for us or Louise was in the placebo group (the wonderful world of medical trials). Louise got pregnant soon after the scratch trial, and we suffered miscarriage #4 at Christmas.

Finally, earlier this year we thought we had something more concrete. We were offered to have further tests with Professor Quenby, through the University of Warwick. At the time the trial had a 70/30 success rate, to begin with Louise had to have two different biopsy’s specifically measuring the level of NK cells (Natural Killer Cells).

The hypothesis is broadly this, women who have high levels of NK cells are more likely to suffer a miscarriage, as the NK cells attack the lining of the womb during early stage pregnancy. My wife’s results indicated a higher than normal level of NK cells. Wow, for the first time, we had something, we felt the odds were in our favour.

Every month Louise would start to take progesterone, and at the point of a positive pregnancy test, start to take prednisolone (a steroid). This treatment plan was intended to calm the NK cells and support the lining of the womb to get through early stage pregnancy.

The final setback?

Earlier this year, on a Sunday morning in a side room at a Mothercare that I hope to never visit again, we had a 7 week scan. The gestation sack was 3mm, it should have been about 10mm by this stage. That’s all we needed to know, we had our dates right. It was miscarriage #5

It was heartbreaking.

The last miscarriage is the most fresh in my memory, you do your best to manage your own expectations, but you can’t help but believe or will it to work out next time.

We were on holiday during the last pregnancy, away in Scotland by the coast for what we hoped would be a relaxing break. I remember waking up one morning, a little hazy, and just had this amazing, genuinely rich, authentic emotional feeling of how much this baby could begin to complete our lives, the next step of our relationship. For the first time, in a long time, I allowed myself to feel the happiness a baby would bring and I wanted it so much.

We started to experience warning signs that the pregnancy wasn’t going well, we could feel it slipping away, we were there for each other, absolutely helpless to do anything about it.

No regrets

We both feel like we’ve given trying to start a family a big effort, and we are discussing trying again, perhaps more tests and trials, and other options like adoption. In some way, shape or form we think we will have a family, we think that’s what what we want, but we might not.

We are privileged and happy with so many other aspects of our lives, but going through recurrent miscarriage often dominates our thoughts at this point, and it can feel like our life is on hold.

We bought the house we live in on the assumption we’d have kids to fill it one day. Not being able to have a baby really does affect everything, and we are constantly processing it, like many many others.

Support

If you know someone who has suffered miscarriages, having empathy goes a long way. In my view, the best thing friends and families can do is just be there emotionally for those going through it.

I would discourage help by offering solutions and other people’s success stories. The likelihood is they have already done the research and tales of happy endings can just make you feel worse. Plus, even the professionals are arguing about the causes of recurrent miscarriage and treatment plans. There really isn’t always a clear next step.

I would also encourage people going through miscarriage to share their stories. Reading honest accounts from others has helped me understand and get through some of the more difficult moments. I would also recommend sharing relevant information with your families, I know that my folks really appreciated me sharing “The Emptiness within” by @kcrewders with them.