TRIGGER WARNINGS; TFMR, Miscarriage.
Before I start I want to say that I am absolutely not a writer. After I finished my dissertation, I vowed never to write anything again, yet here we are…..
I started this blog because these were the words I was tirelessly searching the internet for when, seven months ago, my world came crashing down and the perfect roadmap of my life I had planned out got turned on its head. I tried forums but they were filled with grief and despair, I joined support groups that were all-consuming but all I really wanted to do was to find someone in a similar situation, someone I could just talk to, who just got it.
For the last few months, I have shared snippets of my journey on Instagram, which amazingly people wanted to listen to. The amount of support and kindness I received truly overwhelmed me, but it was the messages I received from people in similar situations that said how sharing my story had helped them, and the friendships I have made which I know will last a lifetime, that have brought me here. What I could never have imagined was just how much it would help me to talk about it. So, for that reason this blog will be an account of my journey, detailed as I am going through it. It will be an outlet for hope and positivity, and one day I hope I will be sharing a post about a rainbow.
So, before I go into the details I wanted to set the scene and tell you a bit about me. Through everything that has happened it is so important to me that people still treat me as me. I’m still here and although battered and shaped by my experience, I will not let this defeat me.
So let’s take it right back….
I didn’t have the easiest childhood. I was terribly bullied for being the smallest person in the school (and I remained the smallest person in the school even when I moved into Year 8!) but when sixth form came along I was the caterpillar who grew into the butterfly. I had shot up over the summer, discovered this new-found confidence and strutted into the sixth form in a tartan mini skirt, white shirt and knee-high boots as if I’d stepped straight out of “Legally Blonde.”
It was from there my life fell into place and I made a lovely group of friends whom I am still very close to now. We lived the teenage dream of misspent weekends getting thrown out of Wetherspoons for using fake id and drinking wine outside in the cold. Like many, I went onto uni and had the time of my life. I drank copious amounts of Lambrini that probably killed a lot of brain cells and lived in a house that, even likening it to a crack den would be generous, but those house mates are still some of my very closest friends. Despite my liver barely surviving those four years, I graduated and set my sights on working in sports marketing – much to my family’s puzzled looks as I could not have been less sporty and had never shown any interest whatsoever in watching sport either. But, I went onto secure my first job for an agency in London where my mantra was ‘work hard play hard’.
Those years flew by with so many happy memories, I adored my job and my colleagues became my family away from home. After a few years, I began to feel pretty burnt out. After uni I had a history of going for guys that had no interest in being in relationships yet I kept falling for them and going back to them, getting my heart broken over and over again (much to my friends’ disapproval!)
After four years in London I decided to quit my job and go freelance – a huge risk and leap of faith. I quickly realised I could make double the money in half the time and by December my contract had come to an end and I decided to visit a very good friend in Thailand. Little did I know that six months later I would have thrown my suitcase in a bin, purchased a backpack (anyone who knows me knows this is the least me thing ever!) and set off travelling. I went to the whole of South East Asia, Indonesia and some of Australia – all on my own, meeting the most amazing people on the way (bar one of the biggest arseholes I have ever met in my life, who I thought it would be a good idea to have a holiday romance with!). (Word of warning though, just don’t ever go to Sihanoukville, we barely made it out alive!)
After six months the amount of sun damage I must have done makes me shudder now. I woke up one day to an email from an old client asking if I would like to interview for an in-house role working in football and I decided this was probably a sign that I should come home. I got the job and it was certainly a shock to the system wearing formal work clothes and commuting across London again.
Travelling had changed me so much. In the words of a good friend ‘the new Kate’ had arrived. I was so carefree and had such a passion for life. I decided I couldn’t hack this corporate life and was packing my bags to go back and live in Australia. But it was that weekend my house mates and I went to a pretentious night club we frequented in Chelsea and I met this guy whilst dancing around a VIP table, drunk out of my brains and no clue what his name was.
Somehow, by 5am when the club closed, I had sobered up enough to wolf down a burger with him in a 24 hour restaurant. And let’s just say the rest is history….. he is the yang to my yin and the calm to my storm. Life was perfect, I remained at my job but we literally travelled the world together whenever we could, we brought our beautiful home and then got engaged in Bali. We were married two years later, the absolute best day of my life. I know everyone says that but it truly was perfect (apart from the bit where I had done too many shots and he had to literally carry me upstairs and hold my hair back whilst I was sick in the toilet on our wedding night!).
Our passion for travel continued and we planned our dream honeymoon the following January. We always knew we wanted a family and talked about two children and when we returned we started trying to conceive and I guess that’s where this story really starts….
Having been on contraception for over 10 years my cycle was all over the place, so before even trying to conceive I started tracking ovulation (a whole new world to me!). At this point I would have thought TFMR (Termination for medical reasons) was a new type of TGI Friday restaurant and although I had obviously heard about miscarriage, it was alien to me and had thankfully had never affected anyone I knew. I ignorantly thought it was something that ‘happened to other people’.
We miraculously got pregnant on the first month of trying, we were both a bit shocked and felt quite unprepared but we were both in a bubble of happiness. I am quite an anxious person so I had a private reassurance scan at seven weeks. My husband wasn’t allowed to come in due to Covid 19 (you’ll see this becomes a constant theme) so he waited outside.
I had never had a scan in my life so had no idea what to expect but was reassured that everything was progressing perfectly and there was a strong heartbeat. The next few weeks went by in a flash, I spent a month at my mum’s, and I felt like pregnancy was the easiest thing in the world, I had literally no symptoms and was breezing through it. I came back to London in time for my 12-week scan. My husband was forced to sit downstairs in the waiting room, but this was a progression from being in the car.
At the scan the baby looked perfectly healthy, they struggled to get a good position for the measurements so I was in there for more than 30 mins, whilst my husband was going out of his mind with worry. I finally came out armed with scan photos which we immediately shared with close family and announced our exciting news. In our blissful bubble of ignorance, we thought that all was fine after 12 weeks and we would be bringing our baby home in January.
I then went into crazy planning mode. If you’ve seen my Insta account, you’ll know I am obsessed with interiors. I chose the wallpaper for the nursery and even the handles for the chest of drawers. I spent hours staring at the scan photo trying to work out the gender based on some stupid ‘nub theory’, I dowsed my wedding ring over my stomach and it said I was having a boy and I worked out that the lunar calendar indicated a boy too. I was sooo eager to find out the gender, I booked the gender scan for three weeks’ later – it was all I really focused on.
Whilst I was nesting and filling my days on furlough, we were still waiting for the blood test results to come back. We had been told that if anything was high risk we would be informed immediately. By this point a week and a half had passed and we just presumed no news was good news and were expecting a letter in the post to affirm this. Two weeks passed and still nothing, so I called the hospital and asked about the results. I was quite rudely dismissed and told they were in the post, which I assumed meant everything was fine and there was nothing to discuss). Another few days passed and still no post. I anxiously waited daily for the letter box to open. I called the hospital again and demanded to speak to a midwife. I was told I was wasting NHS time and that they were extremely busy during Covid but they agreed to get her to call.
Another three days passed and for the first time in four months, I ventured into central London as hairdressers had finally opened up again. Before this I had barely left my husband’s side and this was my first solo outing on the train. I shared the scan picture with my hairdresser and made chit chat about the due date and the plans for the nursery. As she’d just finished putting the foils in my hair and I was sat under the heater waiting for the dye to set, I got the phone call that would change my life forever.
I remember that phone call so vividly. She told me she was the midwife calling from the hospital. I actually thanked her so much for calling me. She then asked where I was and if my husband was with me. Thinking this was odd I said shakily, “I’m in the hairdresser on my own.” She then fumbled about asking if she should call back at a better time to which I replied, “You’re making me really anxious. Is everything ok?” Apparently, that was my invitation for her to tell me every minute detail right there and then. There was no attempt to leave anything unsaid.
From that moment she started to talk in a language I didn’t understand, not one bit. She referred to a severe abnormality and started reeling off percentages about survival rate, that I might not make it to term, that 98% of people in my situation would terminate this pregnancy. In that moment the world literally caved in. I dropped my phone and collapsed, foils of bleach still in my hair and in a room full of strangers. When I came round and went out for air, I frantically called my husband (he is notoriously bad with his phone) but couldn’t reach him and managed to get hold of my mum instead. I couldn’t even get the words out. I was hysterical and hyperventilating.
My husband raced across London to pick me up and the midwife had told us to call again when we were home. I had never experienced shock like it (and I say “had” as sadly I did again later). When we got home my husband spoke to the midwife, I was still unable even to talk and also filled with so much rage that this woman had told me all this when she knew I was on my own in the hairdressers. We were never invited in at any point to speak to a counsellor, geneticist or anyone who might have the slightest insight into this condition. It was left to my husband to use Dr Google. Some how we came across a charity called ARC (Antenatal Results and Choices), a small charity and the only one in the UK dedicated to helping parents understand the devastating news and work through the consequences of results like ours. I will never be able to thank Jane at ARC enough for the support she gave me and my family in those weeks of utter despair.
The next day we were asked to go to the hospital and have more tests, as we entered it suddenly hit me we were in a maternity unit as new-born babies screamed and pregnant mothers waddled in. I had another panic attack as my husband begged them to find us a room away from this. After an hour of waiting outside we were finally seen. We were told the test results would be back on Monday (it was Friday) and that the result of these would be 99.9% conclusive if it was the condition we were told.
That weekend was truly the longest of my life. I didn’t eat or sleep for more than 72 hours and if I did fall asleep I would wake up screaming as I crashed back to reality. My husband was beside himself with worry for my mental health, desperately trying to hold it together to look after me whilst also frantically research what the baby’s diagnosis actually meant. I have never felt darkness like that weekend and I pray no one else ever does, although I know the reality is this is happening to women every day.
By lunchtime on Monday the test results were back and were 99.9% conclusive. I am deliberately not going into details about the condition, the tests etc now. I find it extremely traumatic to talk about when it is still so raw, but I hope to share a specific blog post on this in the future. I am not a religious person at all but I had prayed to every god and every angel over those 72 hours that the previous results had been somehow wrong.
After that call we were just left to ourselves, told only to call back if we decided we wanted to book in for termination for medical reasons (TFMR). We had never ever talked about what we would do if something was severely wrong with the baby. Why on earth would we? But I knew within a second of hearing the diagnosis in the hairdresser’s what we had to do. It is the single most awful thing I can ever imagine a person having to decide on; it was literally potential life or death.
If we choose to continue the pregnancy there was just a 40% chance I would make it to-term and in the event that the baby did survive, the extent of their suffering could have been unimaginable. It was in that moment we realised it was not a choice at all; we had had that choice taken away from us from the moment of diagnosis. We have had to endure the pain and suffering of losing our baby, so our baby did not have to endure that suffering in life. In the words of my good friend, Emma Belle who has also heartbreakingly been through TFMR it was ‘A decision made with the most love and the biggest heartbreak’.
In the weeks and months that followed all I really felt was numbness, I didn’t know who I was and no longer had a purpose in life. I was utterly consumed with grief, guilt and despair. It was during this time I decided to start a home account on Instagram, not knowing it would become a lifeline. I hid myself amongst the squares, presenting picture perfect shots of my home and talking to other home accounts about sofas and vases. What I was presenting was soo far from reality and after a few months it just felt fake.
It was on Baby Loss Awareness Day, after seeing a post from Tommy’s that I decided to share a glimpse of my story and the face behind the squares. I soon found this new world of incredible women who had gone through or were going through similar things and I no longer felt alone. They helped me navigate the next few months along with the support of my wonderful family and friends. I finally felt ready to try to conceive again. I had this compelling urge to bring a healthy baby home and believed that would somehow fix this.
After only two months of trying, we were pregnant again; that was (and that’s sadly a very big WAS) the only silver lining in all this – that we could get pregnant so easily. Seven weeks of constant anxiety rolled by and I threw myself into work as a distraction, speaking weekly to my new therapist. I had originally contacted her to help me through pregnancy after loss and I truly don’t believe I would be sitting here writing this without her. She prepped me to forgive my body for failing me, to trust in it again and to find hope. I really did find that hope, and, as the morning of the early scan came, we went for coffee and drove happily through the streets of London.
I begged and begged for my husband to be allowed into this scan and they agreed based on what had happened previously. The sonographer was very business-like and quite abrupt. She proceeded with the scan but within minutes her face changed. There was no heartbeat, the pregnancy had stopped at five weeks. It was a missed miscarriage (another term I had never heard of, I may need to write a glossary!). I remember so vividly staring at the white wall. I remember the smell and temperature of the room and it was as if the world just stopped. But then came the screaming, a howling noise that echoed out of my body that no one could tame, despite three nurses all rushing in to try.
I was forced to wait two more weeks ‘in case I had got the dates wrong.’ I had tracked my dates meticulously and there wasn’t a chance I was an hour out – let alone two weeks, yet they refused to declare the missed miscarriage. It was then I realised that a missed miscarriage is the cruellest trick on earth, your body thinks the pregnancy is continuing with no issues at all, no warning signs, no side effects and therefore doesn’t reject it. I could not believe I was being forced to continue the hormones and sickness for two more weeks, all with no hope in this progressing.
I went to a different hospital for a second opinion and they told me they would only make me wait ten days before they declared the miscarriage. It seems like the better of the two horrendous options. After ten days I went back and they formally declared the miscarriage. I chose medical management where you take tablets to try and reject the pregnancy. After 48 hours of pain, physically and emotionally, I presumed all was over and the pregnancy had passed. It was only at the follow -up scan I found out that the miscarriage was still incomplete. That I would now need surgery as I was at risk of infection.
It was now the week before Christmas and the hospital could not get me in for surgery until Christmas Eve. I point blank refused to wait that long and spend my Christmas Eve like that. After calling more than 25 hospitals in London one finally agreed to do the surgery the next day. It was a win. I actually felt such a sense of achievement and relief that I had finally found somewhere to help me. The surgery however, did not go to plan, it was attempted three times (I was awake the whole time!) before they declared it complete, but at last it was over. At least I could spend Christmas at home.
After Christmas I went in for a scan to check my recovery. It was then I found out the surgery had caused complications; they thought that it may have created scar tissue and because of this I am no longer able to get pregnant as it stands. (This was the only, and I mean only, glimmer of hope we had left). So, as I write this, I am awaiting surgery to assess the scar tissue and hope that after a period of recovery we can recommence the journey. (I will share more on what route that will be in my next blogs.)
I really believe the saying ‘it never rains but it pours’ could not be more true for us. Eight years together with barely an obstacle in the road and then the downpour of the last year. But we will not let this defeat us. We will battle the storm. Out of the heaviest rain showers come the brightest rainbows…..