Miscarriage Stories: I had never heard of a partial molar pregnancy. I wish I still hadn’t

Two weeks later we went for an early scan as we were so impatient to make sure all was ok. That Sunday was the first day of our year of darkness. To cut a very long story short what was originally thought to be a missed miscarriage quickly became a diagnosis of a complete molar pregnancy or Gestational Trophoblastic Disease GTD followed swiftly by urgent surgery.

Initially, things went well and my HCG level started to fall but then began to rise again after 3 weeks so a second surgery followed in September. What followed was months of weekly blood to ensure HCG fell as it should. I finally “normalised” in November and had to wait until April 2018 for six months of ‘normal’ results before we could try again. It was the longest toughest 10 months and although at the end I should have been happy I just feel completely empty and lonely.

I found the whole thing such a lonely road and at the time there was NO help in Ireland for women who go through molar pregnancy.

Physically I looked fine but I was a complete mess. I had gone from being pregnant to suddenly not being pregnant and rushed for surgery then the added worry and complication of molar pregnancy was incredibly upsetting. There was even talk of needing chemotherapy. I was reeling.

I had plenty of friends who sadly experience ‘normal’ miscarriage, even ectopic pregnancy but no one had a clue what I was talking about when I was diagnosed with molar. Even a miscarriage association I called in my darkest hour pleading for help told me they couldn't help me as I hadn't had a ‘real’ miscarriage.

I was consumed with anger over the whole thing and really couldn't see through it. I kept it all inside as I felt people thought I should just get over it. I went straight back to work even on the day we had the scan and found out I lost the baby.

Then for the following ten months every Tuesday, I would walk to Holles Street from work with tears rolling down my face, in for weekly blood tests, seeing the same nurses but having to start the whole story again and then getting the looks of pity, then straight back to work to pretend everything was fine.

Thankfully I went on to have two beautiful little girls but this experience has changed me. To this day I still don't hear about molar pregnancy on the radio or any talk shows and I know there are women like me going through it now and wanting to have access to more information.

I did so much research at the time and contacted a clinic in Manchester but also moved my care to the Cork maternity services at CUH and their new centre of excellence for GTD which at the time was only starting out but without them, I would have given up.

‘Testing had shown a partial molar pregnancy’ 

I lost my first baby on the 1st of June 2017. It was my second scan. We'd already seen a lovely strong heartbeat at 9 weeks so it didn't even dawn on us that this would happen but unfortunately there was no heartbeat. A missed miscarriage it was called!

I felt so empty, angry, upset, scared. I had an ERPC on the 2nd of June. Sat in theatre while the nurse told me the consultant is running a little late and she's delivering a baby next door. I wanted to crawl into a ball and die. After the procedure, they asked me if I’d like the remains cremated and sent to a burial site or they could give them to me in a tiny white box to take home and bury. It all sounded so surreal.

A week later I received a call to say testing on the remains had shown a partial molar pregnancy. Very rare and I couldn't try again until my HCG had levelled. So every week I went into CUMH and sat next to all the women in the early pregnancy unit excitedly waiting for their scans while I was waiting to see if my uterus was empty.

I was one of the lucky ones. I went on to have my beautiful daughter exactly one year later on the 2nd of June 2018 and then my son 16 months after that in October 2019.

I, unfortunately, had two miscarriages in July and December 2020. An isolating and lonely experience not having my husband to support me but I was privileged to get to go home to two healthy babies very different to my first when my house was empty.

I'm currently 19 weeks pregnant and holding my breath every single day. 

Having to go to all my scans alone to date has been nerve-wracking to say the least. I've struggled to look at the screen and only release my breath when I hear "there's the heartbeat".

The fear and isolation that women all around the country must be feeling at present with no one allowed to support them for these petrifying scans is frightening to me.

‘I am currently going through a partial molar miscarriage’ 

After three years of IVF - seven rounds - we had our amazing son Finn. 11 months later we became spontaneously pregnant, an absolute miracle, such intense unbelievable joy. Faith restored in my body, the thrill of having a secret and the joyful sharing of that secret with our families.

Our 12-week scan showed no heartbeat, news I received alone due to the last vestiges of Covid restrictions. 

The last month has been a haze. It turns out I am currently going through a partial molar miscarriage the basic upshot of which is that my body continues to act as if it is pregnant, nausea, rounded belly, high levels of the pregnancy hormones which my system refuses to let go of.

Last Thursday I had to go through the whole process of the D&C again. Three weeks after my first. The first flash of grief and loss has stretched to fill the last month and looks set to continue for the next three to six.

I had never heard of a partial molar pregnancy. I wish I still hadn’t.

‘I had an ectopic pregnancy’ 

I experienced a double ectopic pregnancy when pregnant with twins on May 20th 20O2. Both my fallopian tubes were affected which left me with very few options for having a baby, IVF being one.

I became pregnant on my second IVF attempt but as I was bleeding, I wrongly assumed it was unsuccessful until a test and scan revealed otherwise. I was pregnant but the bleeding continued until I eventually had a miscarriage.

All this was very traumatic and devastating. I had three more unsuccessful IVF attempts until eventually in 2007 we adopted a beautiful little girl from Vietnam who is now 14 and keeps us young keeping up with a teenager.

‘My ectopic pregnancy was so lonely’ 

I had an ectopic pregnancy in 2013. I never heard of anyone having an ectopic pregnancy before. I felt very scared as the doctor told me I needed emergency surgery and that it was an emergency situation. I felt very lonely as I had know one to talk to that had experienced this before.

I also felt the conversation made people feel uncomfortable as if it was something that should not be talked about. I was offered no services or support afterward by the hospital or my GP. I was very unsure if I was allowed to feel sad and grieve my loss or if I was supposed to get on with things.