Kate’s story
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. 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. I ignorantly thought it was something that ‘happened to other people’.
We miraculously got pregnant during the first month of trying. We 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, but they struggled to get a good position for the measurements so I was in there for more than 30 minutes. 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. 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. 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 called the hospital again and demanded to speak to a midwife.
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, 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.
From that moment she started to talk in a language I didn’t understand. She referred to a severe abnormality and started reeling off percentages about survival rate, that I might not make it to term and that 98% of people in my situation would terminate this pregnancy.
In that moment my world 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 around 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. I had never experienced shock like it. 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. Somehow, we came across a charity called ARC, 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.
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.
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 researching 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. 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 a TFMR. We had never 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.
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 would have been unimaginable. 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 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 so far from reality and after a few months it just felt fake.
It was on Baby Loss Awareness Day 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. 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 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. After calling more than 25 hospitals in London one finally agreed to do the surgery the next day. 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 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. 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 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.
You can read more on Kate’s blog here.