Claire’s story

We had been trying for a baby for nearly a year and a half (we’d actually started going for tests) when we were delighted to find out that we were pregnant. We told a few close family and friends who wondered why I wasn’t drinking. I had an app on my phone that told me how the little dot inside me grew each week and we looked forward to going to the 12 week scan when we could see the little baby for real and finally tell everyone else the good news. We’d waited a long time for this and we were so excited that it was finally becoming real.

I took the morning off work for a vague ‘hospital appointment’ (looking forward to sharing our good news when we went back in) and my husband took a half day too. I remember getting in the lift with another couple who had the same folder of information and were heading for the same department and it felt a bit like we were in a secret club. We sat in the waiting room with our pound coins ready for the machine where you can buy tokens for your baby’s photo, finally getting called through to a room for our scan.

It felt very surreal, this thing we’d been wanting for so long and now we were the ones in the room you see on TV, I was the one rolling my top up and having jelly on my tummy. That little picture on the TV was inside of me and it was actually real!

The sonographer was really lovely, I think she must’ve known straight away. She said something like ‘I’m seeing a few abnormalities’ pretty early on and I thought ‘but she’s going to say ‘but that’s not an issue, we see it all the time’’ … but she didn’t. 

She explained that our little baby had severe abnormalities in its stomach but also that the NT measurement at the back of its neck was double what would be regarded as safe levels. She looked close to tears which told me this was not good news. I remember sitting there numbly. We went back home and shakily told our parents who were just as gutted as we were, and also told our works that we wouldn’t be back in and why. Not quite how I envisioned telling them my news.

At a follow up appointment in the fetal medicine department and after an amniocentesis test, we got the sad news that our little baby boy had Edwards Syndrome. It was unlikely that he’d make it full term and even if he did it would only be for a few days. 

If you are going through this yourself, please don’t lose hope. Give yourself time. You never forget ‘what could’ve been’ but it does get less raw. 

There was no doubt in either of our minds. No matter how much we wanted this baby, his welfare had to come first and I couldn’t bear for him to suffer any more than he had to. We made the decision you hope you’ll never have to make and decided to end our pregnancy.

The staff at the hospital were wonderful, from the sonographer to the consultant, to the nurses on the ward when we terminated the pregnancy who managed to get us in a private room. They made an awful experience so much easier to stumble through.

At first I found it really hard to talk about babies, be around babies or children, anything to do with little boys was really hard. Gradually though, things did get easier. I went back to work after a couple of weeks off and tried to get on with my life. I got back into running which really helped when I was feeling blue and we’ve had a wonderful support network around us.

It’s over 2 years on now and though things do catch you unawares still, it does get easier. We’re still trying for another baby and staying strong and looking after each other. If you are going through this yourself, please don’t lose hope. Give yourself time. You never forget ‘what could’ve been’ but it does get less raw. 

The forum on the ARC website helped me when I was feeling like I was the only one going through this and I hope you continue to help other mums and dads in the same situation, you’re doing a great job!