18. Why we’re sharing our story

Miscarriage is so common and yet is rarely talked about. Unlike other forms of grief, people seem reluctant to mention it, whether that’s through fear of causing upset or worries about saying the wrong thing. On the flip side, I often felt reluctant to discuss what we were going through as I found it often led to making others feel uncomfortable, which in turn would make me feel more sad. I would love to break this taboo, which exists even in the medical profession – I remember attending the GPs to get a sick note following our first loss and the Dr informing me she’d stated ‘gynecological problems’ on the note, rather than the real reason. This made me so mad, I was experiencing the loss of my baby, not a ‘problem’. Maybe by sharing our story we might help other people reach out for much-needed support.

We’re also sharing this story, so the memories of our babies live on. Keeping them present in our thoughts is all we have left. I want to talk about them and have people understand that even though they never got a chance to be, we miss them regardless. Never think that by mentioning them, you will be reminding me, they’re always in my thoughts anyway.

As an aside, it’s also been a pretty cathartic process for me to get all this down.

Lastly, we’re sharing in the hope you’ll support our fundraising for ongoing research in to recurrent miscarriage and molar pregnancy, with the end goal of preventing other couples and families from having to endure the heartache we have and bring them their own ‘happily ever afters’ sooner.

You can sponsor us here: https://www.justgiving.com/teams/KayleighandMatt

17. Our thank yous

The four years as we waited for our happy ending to arrive were the hardest years for us both to endure. The trying, the failing, the grief stretched us to the end of our resolve. Those near to us, helped to carry us.

We are so so thankful for the family and friends that supported us through these difficult years – offering us the emotional and practical support to make things as bearable as possible. Driving us to scans, helping us pay for our tests at Coventry and offering us no end of love and support.

In addition, I can’t begin to thank the wonderful ladies I ‘met’ through the Molar Pregnancy forum enough. This group of strong, compassionate and loving ladies supported me through some of my darkest moments, as only they knew the depth of the grief and toll such repeated losses have on your ability to function and were there to listen at all times, no matter my fears, grief, anger, worries… To have reached the end of our stories with our precious, special babies by our sides is such a wonderful blessing. Thank you, you know who you are.

Other thanks we sent were to Prof Quenby and her team at Coventry, our consultant, Dr Shillito, and the other EPU staff at our local hospital and the wonderful nurse counsellors at Western Park.

Importantly, I also thank the lost ones. Losing a child / children, at whatever stage, is something no one should ever have to go through. If there’s anything good that’s come from such grief, it’s that losing those 4 precious lives has made me a better person and a better Mommy to my Blakey. Never for a second do I take what we’ve been gifted for granted. Every moment, however hard, is savoured. Do I occassionally yearn for more than a couple of hours sleep? Of course, but I would take a lifetime of broken sleep (and extra baby snuggles) over the days, the weeks of crying myself to sleep. Those babies have taught me compassion, grace, persistence, patience, love and the fragility of life. I’m sorry I couldn’t be the Mommy to you I so wanted to be.

Lastly, for me, Matt. Always Matt. He never lost sight of the belief that we would get there, despite me doing so on a number of occasions. He bolstered me, supported me at my lowest ebb and stayed strong when my strength was long gone. I will be forever grateful for our Blakey and for your love.

16. He arrives! What’s in a name….

Eventually (after a couple of scares and trips to the Maternity Assessment Unit for monitoring) our due date arrived… and passed. Every day of my pregnancy I was on edge. We were forever wondering if his movements were normal and I couldn’t wait for him finally to be out and with us. I was booked in to be induced a week after my due date.

Thankfully my induction was speedy (I was already having contractions when I arrived, apparently, I wasn’t aware!) and 6 hours later we welcomed our precious baby boy in to the world. Not even in the delivery room did I let myself accept that we would actually be leaving with him – I was desperate to be reassured every time they listened in with the doppler that he was okay and refused pain relief (bar some paracetamol and gas and air) as I was scared of it having an impact on him.

When he was placed on my chest it was the most overwhelming, surreal, incredible experience of my life. We did it. We got there. We didn’t give up and finally here was our reward. Our pot of gold at the end of the rainbow and  our happily ever after.

We had pre-picked a name prior to his arrival, although had shared it with no one, not even the midwives who asked us in the delivery room, it felt too much like tempting fate.

Although we had considered A LOT of names, Blake had been our ‘boy name’ for as long as I could remember. His middle name, however, gave us a bit more trouble. We went back and forth with what to choose, but nothing really struck us. We were keen for it to have some significance and some meaning and eventually happened upon ‘Quin’, to mean ‘one of five children’. It was the perfect way for us to acknowledge the four precious babies we were never lucky enough to meet and to ensure their memory lived on in our little miracle.

Our precious Blakey brings us joy, laughter and love every second of every day. I still struggle to believe he’s actually here and all ours. I find myself in tears just looking at him and thinking of how far we’ve come. We are so blessed to share our lives with this happy, cheeky and adorable little man and it’s difficult to find the words to sum up the love we feel for our baby boy. I feel a contentment and inner joy, and he has helped to heal the huge hole in our lives and hearts. That said, our hearts reserve a space for the others and not a day goes by that I don’t think about what we had and what was lost. Those four little babies will live on in our hearts and memories forever.

15. A different kind of waiting

For all the waiting we’d done up until then (3 years of it by that point!), this was a whole new level of waiting, nervousness and expectation. The only way I could cope was to draw up a daily chart of the 40 weeks, and mark each day off as it passed. I marked on little milestones to break up the 9 months, so there was always something close-by to be counting down to – the next scan, a midwife appointment, bank holidays, days off, each trimester, viability, full term… It helped me to claw back a bit of control.

We kept having weekly scans and at each one I was just as nervous. The 9 week scan was perfect – our baby was growing just as it should be, we listened in to the heartbeat (183 bpm) strumming away. We found the wait between the 9 week scan and the next scan at 10+3 particularly nerve-wracking – it was somewhere between 9-10 weeks in our second pregnancy that our little angel stopped growing. I was on tenterhooks for any changes in my symptoms, but there was nothing I could detect, we just had to wait.

The 10+3 week scan was on 19th September 2013. We literally held our breaths, I was shaking all over and we didn’t dare look at our consultant as she started scanning. Thankfully she let us know very quickly that all was fine and we turned around and basked in the beauty of our growing little life.

After that scan, we plucked up the courage to tell our parents our news, but with a heavy dose of caution that it could all be snatched from us again. Gone was the early joy we had, and in its place the news was shrouded in uncertainty and maybes.

Our next two scans came in quick succession – a 12 week scan at the Early Pregnancy Unit on 30th September, followed by our ‘dating scan’ at 12+2 on 2nd October. This really helped us, as I stopped the heparin following the 12 week scan (42 injections done!), so it was so reassuring that all was still ok at the following scan 2 days later. The ‘dating scan’ was our first experience of life in the antenatal screening rooms, having never made it past the doors of the EPU previously. It was weird to see all these naive couples excitedly awaiting their first scans, whereas we had already had 5 scans up to that point and we were still as nervous as ever.

Following these scans, it was time to stop the progesterone too – we were really nervous about just stopping all medication in one go, so I tapered off these slowly and stopped completely just before our next scan. The next scan we had was on 17th October, I was 14+3. We were completely transfixed watching our baby move around in my tummy on screen (whilst I was still not feeling any movements yet) and the sound of its little beating heart was extremely comforting. We were discharged from the EPU at this point and it felt so surreal to have reached the end of the first trimester.

At that point, our next scan wasn’t scheduled until our anomaly scan at 19 weeks. For us both this seemed far too long and we booked in two private scans (at 15+5 and 17+5) to keep us going. It was at the second of these scans that we learned it very likely we were having a baby boy!

We were still very much living a day-by-day existence. My bump was growing, but was disguised quite easily and we had still only told our parents and a couple of my close friends, so it was very easy for it all to feel very dream-like. I began to feel a few tiny flutterings in my tummy, which were getting stronger by the day. The moment Matt could feel some of them with his hand on my tummy was magical. Around 19 weeks (and our anomaly scan) we began to see movements from the outside and it began to feel a bit more real, although we still talked in ‘all being wells’ and ‘ifs’, not daring to believe this could finally be it. We learned that Matt could hear the baby’s heartbeat if he listened in at my tummy and this really helped when we were feeling especially anxious.

Our 10th scan was our anomaly scan on 21st November. As each thing was checked off and declared ‘normal’ we breathed a sigh of relief. We also got the confirmation that we were, in fact, definitely having a precious baby boy.

Christmas 2013 came and my bump was now too big to disguise and I let some close friends know that we were expecting – I felt weird revealing this news, as though it was too soon to be sharing with the world (despite the fact many people would have told people months ago). A week or so later and my bump was evidently baby (rather than chub!) and people felt confident enough to congratulate me without me actively telling them I was pregnant. I can’t explain how much these congratulations made me cringe inside – for me, more people knowing meant more people I would have to ‘un-tell’ when things didn’t go to plan. I tried to accept these congratulations with the joy in which they were given (but I apologise if my reaction to your excitement wasn’t as you’d expected!)

We were still deemed ‘high risk’ and so additional consultant appointments were booked to review everything and we were given two additional scans for our reassurance (27+3 and 31+3) – both confirmed that our little guy was growing just perfectly. Twelve scans in all and we were still feeling nervous! We started to buy things and get prepared, re-decorating our spare room into the nursery we had always thought it would be. Again, these things made us feel extremely uneasy – how would it be for us to have to return home baby-less to this house full of baby things?! But still, we had no option but to bury this uncertainty and ready ourselves, in the hope that maybe, just maybe it might actually be our time.

13. Professor Quenby and hope

Whilst we had been trying the fourth time, we had started to do our own research for recurrent miscarriage support, but had found precious little for people in our situation. When our consultant mentioned Professor Quenby and her team in Warwick / Coventry, we latched on to it like a life belt. As soon as I finished on the phone to our consultant, I was searching for everything I could and emailed to find out more. We heard back really quickly, and it was such promising news:

1) We could self-refer (no waiting for an appointment)

2) The clinic is a research unit linked to The University of Warwick, so although there was a charge for the consultation and the test (uterine natural killer (uNK) cell density) they carry out, it was subsidised and charged at cost (£360 vs. the same test I was quoted nearly £2000 to have done privately!)

3) It was something new (at that point we were willing to try almost anything)

I had to wait a cycle following the last loss and contact them once I received a positive ovulation test and we’d then be booked in 7-10 days later. It seemed magically quick and we anxiously waited for a cycle to pass and for me to ovulate. In the meantime, Matt went along to do his sperm analysis test, so we could confirm everything is okay with him. I also did some searching on the Miscarriage Association forum and spoke to a lady who had experienced 11 miscarriages before seeing Professor Quenby, and getting her miracle babe. Hope rose.

Once I ovulated, I got in touch and we were booked in for 31st May 2013. In spite of everything, this was our glimmer of hope and we were excited (although I was apprehensive about how painful the test would be).

We actually saw Professor Quenby’s colleague, Professor Brosens and he was so reassuring. He took a full history and then outlined their proposed treatment protocol and what the test would involve. This consultation was slightly different from those we’d had in the past – there was no talk of ‘just bad luck’ and we felt optimistic. Once the consultation was over, we went ahead with the test. There was an internal scan, followed by an endometrial biopsy. I won’t lie, I found it pretty painful. Thankfully, it only took 10 seconds (else I think I might’ve broken Matt’s hand I squeezed so hard!). Prof Brosens was happy that he got a good sample. The results, we were told, should be back within 4 weeks.

What now… The treatment protocol they follow is quite standard (as far as I’m aware) for everyone, there was just a additional step should they have found that my uNK cell levels were higher than normal.

a) The biopsy itself formed the first part of the treatment protocol and is therapeutic in itself; it shocks the uterine lining to regenerate. So, thankfully it was two birds killed with one stone – the sample had been taken and the first part of the treatment was underway

b) Progesterone. The day 21 bloods I had had done suggested that progesterone was an issue for me, so we were really pleased when we heard this would be prescribed. Prof Brosens actually prescribed progesterone there and then, for us to pick up from the hospital pharmacy. I would need to take this from day 21 of each cycle until day 28, at which point I would need to do a pregnancy test. If pregnant, the progesterone therapy would need to be continued until 12 weeks, if not then I would need to stop taking it and retry again the following cycle. We could only use this for a maximum of three cycles

c) Heparin. Following a positive pregnancy test and a 6 week scan to confirm an intrauterine pregnancy, I would need to inject heparin daily, again until 12 weeks. Apparently this would help protect the uterine cells and would aid implantation

[d) Prednisolone. Should my uNK cell levels come back as raised, then I would need to take this steroid from a positive test

Three weeks later and we received the results. My uNK cell levels were normal, so we would proceed with the plan without the addition of Prednisolone. I had a telephone consultation with Prof Quenby to discuss the results and any concerns. I raised the question of what would happen if we conceived and lost another baby and she told me that they had plenty more tricks up their sleeves. We felt positive.

I commenced the progesterone the following cycle. It wasn’t very pleasant, but not too bad. Day 28 of my cycle rolled around. I tested. It was negative. Month 1 of our 3 months of this protocol was over and we’d been unsuccessful. We ploughed on…

12. Number 4

The tests and the waiting for tests kept us occupied and focused.

Then, April (2013) arrives and I felt a bit different.

We did a test.

I was pregnant again.

After our experience with the third lost one, we decided to try and stay positive, to make the most of the little life. I thought good thoughts. I tried to think ahead to the pregnancy progressing. Maybe this would be our take-home baby. The one.

Then, all too familiarly, at 5+5 I started spotting.

The spotting turned to bleeding.

I was at work. I had a meeting that afternoon. There was nothing, nothing I could do to stop me losing another precious life. I sat in the meeting while I lost our baby.

We were so so sad. After another 9 long months of trying, at probably our lowest ebb, for another chance at our happily ever after to be over so quickly was almost too much to bear.

I rang our consultant and almost begged for more support. She booked an appointment for us for 8 weeks time or so. I was so desperate for more support. I asked whether she could recommend anywhere we could go for private tests (I love the NHS, but I understand its limits). She told me that sadly, as fertility was not our issue, there was little private support out there (well, little with proven results). But (and here was our tiny, flickering glimmer of hope), she mentioned a Professor in Warwick carrying out some research into recurrent miscarriage…

11. Our lowest ebb

Some time between our third loss in June 2012 and the recurrent miscarriage results in September 2012, things started to feel really, really hard.

Our lives felt completely dominated by trying to make our family. I distinctly remember a post I made to the molar forum about how fed up of all the waiting, trying, failing, loss I was. It didn’t help that still ever more babies were arriving every day. People around us who started trying after us were now adding their second children to their families, whilst we were STILL desperately waiting, waiting, waiting. Even a lot of the ladies that joined the molar forum at the same time as, or after, me were getting their happy ending. I felt extremely isolated and left behind. The feeling that our lives were at standstill was never stronger.

I had to take a break from Facebook following the second miscarriage – it was too hard to go on each day and risk being confronted by sonogram pictures (even now the sight of an ultrasound brings back that same sinking feeling of dread). Once you’ve laid there and watched a sonogram of your still, un-moving baby, any ultrasound picture transports you straight back to that moment – a terrible reminder of what was had and what was lost.

It was around this time that we made the step to redecorate our second bedroom (the last room left in our house to decorate, the one we’d been saving for our baby from the moment we viewed the house for the first time). I cried as we painted. It felt a little like admitting it wasn’t going to happen any time soon.

Life was hard.

I remember many morning showers and lone car trips, just sobbing to myself. Or days sat at my desk, silent tears running down my cheeks. The pent-up feelings of sadness, loss and longing, too plentiful to contain.

Our days became divided into 4 week periods. That first week each month, dealing with the disappointment that another month had passed us by without success. Week 2 rallying some positivity to try again and imagine this was the month. Then two long, long weeks of waiting – symptom-spotting at every opportunity, counting down the days until we could test or my period arrived. Only to restart the cycle again.

Whilst we tried to maintain the other aspects of our lives (promotions, new jobs, holidays, families, birthdays, Christmases…), we were so so exhausted from the trying and it was taking its toll on us. It was ever present. Days out and we would see families and want it so badly for ourselves. Time spent with our nieces would remind us of the joy our lives were missing. I had started to believe it just wasn’t going to happen for us, this thought taking root and filling my waking hours. It was one of the most natural things in the world, and we just didn’t seem capable of doing it. When you look at the science, it’s difficult to understand how quite so many people manage it so easily – such limited time each month when it is possible to conceive. Here we were timing everything right, doing everything exactly by the book and still failing. Then hearing stories of those who got pregnant by accident, without even trying, succeeding the first month they tried… So hard to understand why we couldn’t grab a slice of their luck. Thankfully Matt kept the belief strong and remained steadfast in his belief that we would get there eventually, we would just need to keep our resolve and not give up.

Our third Christmas since we started trying arrived. We still hadn’t conceived again. We felt little like celebrating, 2012 had been our worst year by far and we couldn’t wait to see the back of it. What had started so promisingly with that positive test in January, ended with us going to bed before midnight, grieving two more babies than the previous year and wishing 2013 would bring us more luck.

6 months of trying from our recurrent miscarriage results arrived in February without us having conceived, and I was able to get an appointment with our consultant. What now? Why hadn’t it happened?!

She agreed to undertake some more tests – more blood tests for me (joy!), sperm analysis for Matt. Sadly my results weren’t exactly ideal and would need to be repeated the following cycle. Matt’s appointment wouldn’t be until April (more waiting…).

10. Tests. Waiting. Tests.

When the appointment finally rolled around (July 2012), our consultant explained that very rarely do the tests reveal anything, however she felt ‘clear’ tests would be the outcome we should be hoping for. She didn’t want to find anything wrong with us. Personally, we were holding out for these tests finding something, some reason for why we kept loosing our babies. Having spoken to other people in the same situation, I think this is a very common wish – you want to find something ‘fixable’, something you can pop a pill for and then get your take-home baby. It’s difficult to think you might just learn it’s been a series of unfortunate events. We returned the day after this appointment to have our bloods taken. I am petrified of needles, so when I learnt I would need to part with 8 vials of blood, it wasn’t exactly easy, but I squeezed Matt’s hand as hard as I could. He wiped away my tears and got me through it (even when my first arm ran out and they had to go in to the second for the rest!). Matt got away with just the one vial.

Again, we waited. We decided to continue trying during this waiting. We were told at our appointment that I could try taking low dose aspirin, as this can help some people, so at least we felt as though we were doing something different.

Eight long weeks later and the appointment to get our results arrived. I was a complete nervous wreck in the waiting room. The clinic was running behind and I saw an unknown Dr knocking around that I’d never seen before (we’d been there A LOT, we were familiar with most of the staff). I convinced myself that we’d some weird, rare genetic disorder and he’d been drafted in to explain it to us…. nerves do weird things. Matt tried desperately to calm me down and repeated that everything was going to be ok. When we got called through, we learnt that, as predicted, all our recurrent miscarriage tests had come back clear. No sticky blood. No lupus. No weird antibodies. No unexpected proteins. No thyroid issues. No chromosomal abnormalities for either of us. We fell in to the ‘unexplained recurrent miscarriage’ group. We were offered no magic pills. No explanation for why we’d lost our 3 precious babies. No real advice but to keep on trying. Our consultant recognised our increasing desperation and told us to get in touch and book an appointment if we had no luck within 6 months, but also told us she felt confident we’d be in touch with good news before then.

We left the appointment with mixed feelings – buoyed by our consultant’s positivity at our clear results and optimism for good news soon, but with grief weighing heavy in our hearts it was hard to keep our resolve strong.

9. Third time’s a charm?

As instructed, we waited a cycle before the difficult step to start over trying again. We were grieving. We had had all wind knocked from our sails and struggled to rebuild ourselves. We were so desperate to move forward, to make the baby, to start the family we so yearned for. The first cycle, we were unsuccessful. More waiting. The following cycle (June 2012), we found ourselves unbelievably having conceived again. Our third pregnancy in 15 months. Just to repeat, we were pregnant again for the THIRD TIME in 15 MONTHS!

I rang and booked our early scan. We didn’t talk about the pregnancy. We tried to carry on as ‘normal’. Tried to protect ourselves. Tried to urge time on, wishing the days away, and God were they long, long days.

At 5 weeks, I started spotting. This time, the spotting quickly turned to bleeding, and I knew we’d lost another very wanted baby.

Trying to protect ourselves by not talking about it had been pointless. It didn’t stop the aching pain at another life lost. At another dream ended. In fact, I felt sad not to have made the very most of the precious time I had with that little life inside me.

I rang the EPU and spoke to our consultant through my tears. She agreed to get us in for recurrent miscarriage tests (explaining that we don’t strictly meet the NHS ‘3 miscarriage’ criteria, given the cause for one is known, but agreed nonetheless). We were booked in for 5 weeks time.

Again, we contacted Western Park for a post-miscarriage check that my hCG was back to normal. It was. No molar pregnancy signs, but no baby either.

Why couldn’t we do it? What had we done to deserve this? All we’d ever dreamed of seemed to be drifting further and further from our reach.