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Edward’s Syndrome and miscarriage

Charlotte talks about experiencing a miscarriage while preparing to make a decision about what to do after finding out her baby's chance of survival was very low.

We were called into the scan room and that's where our lives just stopped.

At the end of September I had a very slight bleed when I was 10 weeks pregnant, so I called the midwife team and they got me in for an early scan. I had to do this on my own, but I was not worried, I’d had a successful pregnancy before and I thought I would be fine. Which at the time was true. I had the scan and everything seemed fine, although the sonographer said “you are only 9 weeks, you need to move your 12 week appointment back”. It seemed off because with my last baby everything was bang on. But I just thought, ‘ah well, just one of those things’.

The 12 week scan came around and wow, given that we were in the middle of the pandemic we were so lucky my husband, Sam, could come with me. I was so happy! We walked in so confidently and naively. We said we didn’t want the screening test, we didn’t with our first and felt whatever the outcome will be, will be.

We were called into the scan room and that’s where our lives just stopped. What was a really chatty calm environment turned cold and and quiet. “We know you have not asked for the screening, but there is a significant amount of fluid around the baby. I need to get a doctor, this is not going to be a good outcome”.

We were at the hospital for a good hour, but it felt like 3 days. Our options were laid out to us, the survival rate was really low. We were offered a CVS test after the weekend, then we would have to choose to carry on with the pregnancy or have a termination.

So many emotions and thoughts went through our heads, but for us, it was likely we were going to opt for a medical termination. That weekend I don’t think I left my bed, we were both so numb. But I had a weird feeling, I had no sickness and my boobs had stopped hurting. I knew I had lost the baby.

On the Monday we went to the hospital for the CVS test and as the doctor checked, they could not find a heartbeat. Was it bad to feel relief in this? That we didn’t have to make the decision ourselves? It was like nature was taking away the heartache of ‘what if?’ for us. We were still absolutely heartbroken.

So that was it, I decided to have the miscarriage via operation. The doctor had told me she had booked me in for the Wednesday. So, on the Wednesday I turn up at the hospital at 7.30am and Sam has to leave me at the entrance to day surgery. I get taken into a room where I am asked to wait until the surgeon can come and talk to me.

The surgeon finally comes into the room I have been on my own in for hours now, “I’m going to try my hardest to fit you in, but if I can’t you’ll go on the emergency list and be done this evening”. I could feel my eyes just fill up. “Oh and we’ve lost your consent forms and what do you want to do with the tissue, we can dispose of it or have you arranged something yourself?”.

What?! This is the first time we have heard about this, so this heartfelt decision that should have been done at home with my husband is now being done over the phone an hour before I head down for my operation (they got me in). As I was wheeled down to theatre, a health care assistant was with me who said “oh there’s plenty time for more, you are young”. At that point the whole day was so laughable I just smiled and wished to be at home.

We now know our baby was a little girl, Daisy, and she had Edward’s Syndrome. And we think about her every day. 6 months on and we are still waiting for results to see if we are carriers, hopefully this will put any more worries to rest.

Covid has been hard on everyone, but women who are pregnant or going through miscarriage have had to be so strong and brave, and we should be proud of what we have had to overcome.

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