Author Archives: TherealityofTFMR

I found out I was pregnant back in May 2018. It wasn’t planned and was suspected and I found out completly by accident. Truth be told I was in an already dark place.

Having a clear out one day I was sorting through drawers and found a pregnancy test, “well I don’t need these I thought so I went to bin it” now I don’t know why but I decided to use it since it was going in the bin anyway. I had no signs of pregnancy hadn’t had a period for about 8 weeks I thought down to not eating causing them to stop. And there it was 2 lines.

I went to the local family planning centre that weekend and had it confirmed. Then booked a midwife appointment becaise of the lack of periods for some time she sent for an urgent scan to be able to get how many weeks. In I went “your 5 weeks pregnanct here’s some photos”.

All was fine I was strggline with my own mental health at the time and spent the next few weeks in a blur of how my life would look with a baby and how it was all I’d wanted for years but the timing and circumstances werent ideal.

The 12 week scan came around and my friend took me. He was nervous I laughed and said chill out you get to see the baby or blob as I could never see anything on scan pics and hear the heart beat and its in and out. We got there and had scan my bladder was too full so had to try twice. Afterwards we were lead into a room. The consultant asked if I knew why I’d seen her I said we’ll yeah it’s the 12 week scan. She explained she was a higher up consultant and didn’t generally do routine check up scans and that the nurse at the 5 week scan had noticed abnormalities but they can’t mention them till 12 weeks. She reeled off lots of new words hydrops turner’s syndrome Edwards syndrome tests and possibilities. I didn’t take much in but she was quite sure it was turner’s syndrome tot he point she said your baby is a girl I’m sure as only girls can suffer from turner’s and I’m that sure it’s what it is.

I got an appointment for the very next day for a test to check it was a 2 hour drive away as the local doctor was on holiday and they had no cover. When we got there it was a giant needle they insert into your womb wriggle it about and collect a tissue sample. Now it sounds horrific but if your going through it don’t panic it feels a bit weird when you can feel it moving as they have to move to sick a bit of tissue into test tube but it is not painful.

I was told I should hear back shortly and sent on my way being told to take it easy as it may be a little sore. Only a day later I heard from the consultant she confirmed it was turner’s and apologised for it not being better news I asked her what it meant and she said the local consultant and midwife team would be in touch to answer questions.

What was next? Next I had to research I had a condition to be able to look up for advice and support

This week is baby loss awareness week. And as many are aware it’s something i have experienced. I am 1 in 4.

I’m usually quiet on the topic other than anniversarys and like to keep my experience and memories private. However I am increasingly becoming aware that to break the stigma and misconceptions these topics need to be spoken about and shared for people to know they exist and to understand. I certainly had no idea before I was the one living through it.

For one its the first year I personally have seen TFMR included in the awareness graphics along with some other less known types of loss, and its one of the reasons why the below quote rang true for me for so long. This well publicised baby loss awareness and a time to remember the babies lost would come round each October and everywhere i looked I’d see miscarriage stillbirth  no mention of Tfmr and I agreed I didn’t need to grieve like those that had being through a miscarriage or still birth it wasn’t the same. When it first happened I went through the leaflets the hospital provided and searched websites for help and advice all were the same no where really mentioned tfmr. And it should be mentioned as it does exist sadly more often than expected.

I can only imagine how heartbreaking it is to hear the words there’s no heartbeat when you go in all excited to the latest scan. To deal with being told your baby’s died in the womb. The reality for me was this: Truth be told I’m not really a religious person but I prayed to hear those words and that may be uncomprehendable to most but the words I had heard were your baby’s not compatible with life you must decide whether to end her pain or not… I didn’t want that on me so I prayed at each scan that the decision would have being made for me. Tbf the consultant expected it too she couldn’t hide her shock each time that the screen showed she was still with us. After that I questioned and quizzed and challenged them well if she’s got such a stronh heartbeat then how can she not live? Clearly she’s strong enough. They explained the conditions, the risks, the likely hood of survival and again and again I said but she’s got this far and but this could happen iv read about this… The response was pretty blunt. Your baby girl may make it through pregnancy she may even survive a few weeks on this earth.. But she won’t live and she’s in pain and do you want that to continue?

As a Tfmr mum you don’t only loose your baby you live with the guilt of what ifs, you Live with knowing the pill you sat and swallowed stopped their heart. You have a labour and get to see and hold the baby you choose not to live.

I struggled immensely during the progress although didn’t realise until much later. As I got the chance to hold her spend the weekend with her get photos of her. In some ways I was lucky some losses don’t get that chance but I also felt I didn’t deserve the time and so wasted it I didn’t get the photos I couild have done I didn’t get the cuddles.

I got guilt, I’m only learning now that actually  it was done out of love and as the hardest decision ever to be asked to be made it was a choice between my pain and hers. I got to alter my path whilst friends who were pregnant at the time picked prams and car seats I got to pick a casket and whilst they decorated their bedrooms I decorated her planter. They got to hear crying from the back seats whilst they drove from the hospital I got to sit her on the passenger seat for a silent drive home.

Iv had my experience compared to an abortion and for quite some time I agreed. I choose it and in those circumstances they choose it. I can see the similarities. Even the doctors told me it was classed the same the week after when I had such a bad infection the thought I had contracted meningitis. That needs to change it is not the same and whilst in both cases people have their own personal reasons they should be categorised differently.

Baby loss awareness week is focused on raising awareness and for this reason I will continue to share snippets of my story to help people understand, to help someone reach out if they’re going through something similar, to help break the stigma.