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… but you didn’t lose a baby!

sad, depressed

Hearing those words once was one too many times.

 The sheer ignorance and lack of thought that some people have when attempting to ‘comfort’ people who are suffering miscarriage is astounding. Since my molar pregnancy in 2010, I’ve made it my mission to raise awareness and discuss my experiences in an effort to make it more commonly known. As it’s almost Pregnancy and Baby Loss Awareness Week, I thought it appropriate to write this post as it isn’t commonly known about. I even had to explain it to midwives when I was pregnant with my second daughter.

Let’s start at the beginning…

Those two faint lines. Who would have thought that they could mean so much? Within seconds of seeing them for the first time, your mind is filled with pregnancy, labour, birth, naming the baby, birthday celebrations, first teeth, first words, first steps… first everything. This was my first pregnancy after 18 months of trying unsuccessfully. Infertility had certainly crossed both our minds and we had even been to the local clinic who had begun investigations.

After the initial shock and excitement wore off, I began to concern myself with the first scan and how I would cope with labour. At just six weeks’ pregnant, I began to bleed. I immediately rang Medicom (Norfolk’s midwife telephone line) and they told me to rest, but it was perfectly normal to have a little blood. A few days later and I was still bleeding, so I booked an appointment at the local surgery who organised for me to have a scan at the Early Pregnancy Assessment Unit (EPAU) at the Norfolk and Norwich University Hospital (NNUH). 

The start of hair loss – this was the result of one brush through of my hair

The worry grew and grew until the day of the scan arrived. Because the pregnancy was in the early stages, the scan was an internal one. The look on the sonographer’s face told me everything I needed to know, or so I thought. He explained that I’d had a missed miscarriage and basically sent me on my way. Later that evening, a nurse rang to apologise for me not having received the information I ought to have. She explained the options I had, but I chose to let nature take its course. An appointment was booked to return for a second scan two weeks later to make sure that everything had progressed as it should have. Although I continued to bleed slightly and still felt incredibly nauseous, I didn’t feel like I’d had a miscarriage at all. I still felt pregnant and pregnancy tests were showing two strong lines. 

The day of the second scan arrived and the words ‘molar’ and ‘pregnancy’ were mentioned. This time, we were ushered into a side room after the scan, which, this time, showed evidence of conception (I think those were the words used). I was handed a leaflet about molar pregnancies, which I read straight away and was asked if I had any questions. A complete molar pregnancy is where there is a problem at conception. The sperm fertilises an empty egg and so all of the chromosomes come from the male. Instead of a baby forming, a mass of cells is produced. In my head, the only word that I had really taken on board was ‘cancer’. The final section said that if the tumour regrew, it would be treated as cancer. But that was rare, so although it was on my mind, I never thought that it would happen to me. 

Because of the fact that my body hadn’t expelled anything naturally, I was booked in for an emergency D&C the following day. “It could be worse,” I kept telling myself and others as I tried to put on a brave face. The surgery was somewhat traumatic as I wasn’t warned about how much I would bleed. They told me to expect my results from histology within a couple of weeks as to whether it was actually a molar pregnancy. 

A couple of days later, following hours and hours of bedrest, I started to burn up (it was July) and then shiver, alternating between the two states. A quick phone call to the local surgery and I was prescribed antibiotics for an infection. Within a couple of days, I was feeling much better though still incredibly nauseous.

I returned to work for the final week of the summer term that year. On the last day, we headed to the local pub to have farewell drinks for a colleague who was leaving us. I headed off home and ordered an Indian takeaway and then rang my mum to tell her I had survived my first full week at work in months. As I ended the phone call and stood up, I haemorrhaged. Clots had started to force their way out of my body. A trip to the out of hours doctors followed by admission to hospital followed within a couple of hours. I was passing fist-sized clots as I arrived on Cley ward. They put me in my own room, explaining that the histology results showed my pregnancy had been a molar pregnancy, and they looked after me well. Unfortunately, the amount of blood I had lost caused me to faint during a middle of the night trip to the toilet. I managed to pull the cord as I predicted I would soon hit the deck. 

Cycle 3 – blood transfusion followed by an overnight infusion

The next couple of days were a bit of a blur. I was encouraged to walk around the grounds and, because of the antiemetics, I was able to start eating a bit more and began to feel stronger. A scan showed my tumour had returned and measured 2cm. On returning to the ward, having been told to wander around as I would soon be discharged, I was told that Charing Cross (CX) hospital in London had been desperately trying to contact the ward to tell them I needed to get there straight away to begin chemotherapy treatment. She told me I would lose my hair and that they were arranging transport. I was taken by ambulance to Charing Cross that evening. At times, the blue lights were used. I had never been in an ambulance before and certainly didn’t expect to have to be in one for so long and at such speed.

Upon arrival, the A&E department terrified me. It was not what I was expecting at all. My mind drifted to Casualty as I watched security chasing a non-English speaking man around the corridors with blood dripping from a wound to his head. Finally, a few hours later, I was taken to the oncology department. That’s when it hit me; I was there because I was being treated for cancer. The dated wooden interiors were a far cry from the clean white surfaces of the NNUH and it added to my fears. No one explained to me how this would work. Lying there, listening to a poor lady suffering from an inoperable brain tumour saying hail Marys and the clicking of a young girl’s IV drip machine, I just felt more and more scared. 

They scanned me the day after I arrived and the tumour now measured 4cm. I began chemotherapy treatment the following day. Low risk treatment. This was in the form of an injection in my bottom once every other day until I had received four in total. I then had six days off. During this time, I was on complete bedrest. I wasn’t even allowed to get up to use the toilet. 

Blood tests every other day, to measure the level of hCG (the pregnancy hormone) in my body, showed that my levels were dropping. A non-pregnant person’s hCG levels should be below 5; mine were 175,000 upon arrival at CX. After three cycles of the low risk treatment, I plateaued at around 30,000. I knew that this meant the high risk (IV chemotherapy) was what would come next. This involved an overnight infusion at CX one week followed by a couple of hours at NNUH the next. 

Finally home (albeit only for the weekend) after my long stay in NNUH

The first cycle was ok. I was shattered, but coped. Physically, I could walk around still and had some energy left. To look at, I still had my hair. The second cycle was much harder for me. I began to lose my hair. No one had told me it wouldn’t necessarily be my head hair that went first! That was a shock. Before my third cycle, I had my hair shaved off. I seized the opportunity to take control while I still could. I was in charge, not the cancer. The third cycle was even worse. I felt so sick. Just before my fourth, the consultant informed me that my levels had dropped to ‘normal’ and now I would need just three more cycles of a reduced dose. I began that day. This was by far the worst cycle. I kept throwing up and couldn’t keep any food down. It didn’t get any better, even after taking the folinic acid (this stops the chemo from working, preventing further damage) the following day. On the Wednesday, the day before my next treatment at NNUH, oncology rang to check on me. I explained I hadn’t managed to eat and felt dreadful. Upon arrival there, as they wanted to see me immediately, I was throwing up blood and begging for sedatives and antiemetics as I felt terrible.

Blood results showed I was seriously ill and the amount of chemo still in my body was far too high for this long after my last IV treatment. I was admitted. My health continued to deteriorate, so I was moved to the high dependency unit (HDU). My whole body turned purple at one point and I had zero platelets. I was on a regular diet of transfusions and even managed to deplete the hospital’s stock. Although I can smile about that fact now, it really was incredibly serious. I remember only a few moments from this time and the worst is certainly the moment the doctor needed to check with me that I realised I knew it was ‘touch and go’ and that I might not survive. I also remember hearing Grant Holt score against Ipswich (I listened to the radio a lot apparently) and I managed to raise a fist in celebration. Finally, my body decided it needed to get better and it did. Luckily (in my opinion anyway!), I’m here to tell the tale and went on to have two beautiful rainbow babies, but it was a very challenging journey to reach where I am right now. Falling pregnant after a molar pregnancy can be a very daunting and anxiety-fuelling time with further monitoring in addition to the six-monthly tests. So, although there never was a baby in my womb during my first pregnancy, it was still a pregnancy and it was still a loss. This is why I prefer to call the week ‘Pregnancy and Baby Loss Awareness Week’ as it encompasses both types of loss rather than one or the other. 

Six-monthly monitoring through Charing Cross

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