I decided later on in life, at the age of 39, that I wanted a child, but being single that presented a problem.

After much research and soul searching, I eventually got my head around the decision of going to a clinic and using a donor. It happened the first time and that calmed all my fears; it must have been meant to be if it happened so easily. I had the easiest pregnancy ever, no nausea, fatigue or backache, already he was the best baby ever! I had all the genetic tests and scans and everything came back normal: 8 weeks, 12 weeks and 20 weeks.

I chose not to find out the gender, wanting to be surprised, just relieved that everything was alright. The sonographer talked me through all the different areas, heart, spine, brain, kidneys and all looked great. She just couldn’t get a clear picture of his face because he was shy and had his hands across it, so we booked a scan for 25 weeks for another quick look.

I happened to have a routine appointment with the Consultant on the same day so it worked out well. I had a couple of hours between appointments so was wondering where I’d go for lunch while I was lying there. And then my world shattered. ‘I think baby could have a cleft lip, I’m just going to get my colleague’. Don’t panic I thought, it’s a cleft lip not the end of the world until the second sonographer mentioned that there was a problem with his brain too. They wouldn’t say any more than that and I had to wait for my later appointment for more information.

It only got worse, the Consultant had a list of issues, small bones, brain abnormally developed, small chest among other things. She immediately asked the question ‘Do you want to continue on with the pregnancy?’ I was stunned that it could be that bad, I just kept asking how none of this was seen five weeks ago and what had happened in between. Had I done something? I had a bad cold, could that have done it? There were no answers and I was referred on for further tests.

The weeks that followed were a daze. More scans, amniocentesis, fetal MRI’s and with each one I hoped I would get answers or even a diagnosis. Somewhere, at the back of my brain I hoped that I’d go in and they’d say that it was a mistake, everything was actually ok, but of course that didn’t happen. In the absence of an actual diagnosis, the doctors could only guess at the prognosis of severe brain damage, epileptic fits, breathing difficulties, digestive difficulties and skeletal issues also.

At that point I found out that he was a little boy; my poor boy had multiple system abnormalities. They then explained that they couldn’t classify it as a fatal fetal abnormality because they weren’t sure if he would survive for longer than the 28 days that classifies it as a FFA. The decision was mine alone to decide if I would let my gorgeous boy suffer for his short life or travel to Liverpool to end the pregnancy.

It is a decision that no one should ever have to make, it is unimaginable, but I had to protect my son from a life of suffering. I got the best advice I could from a mother who had been through something similar; to cherish every moment I had with him. Not distance myself as it can be an instinct to protect yourself from ‘bonding’ further –  but the moment the test comes back positive you’ve already bonded. In the 10 days I waited for my appointment in Liverpool, we went on walks and did some things I had planned to do when he was born. I slept with a blanket so he could be wrapped in it when he was born and have something of me with him. I cherished every kick.

The few days in Liverpool, I was in survival mode. I had my amazing friend by my side but no family, nor anyone else could be with me. Within 20 minutes the Consultant was sure it was Joubert’s Syndrome; a rare genetic disease with a bleak outlook. With compassion, he ended the pregnancy. The staff there were absolutely amazing and they made a horrendous situation as bearable as it could have been.

It took two days to induce me, I think my body wanted to hold onto him but I eventually delivered him on the 21st August 2019. I got to spend a glorious day taking pictures and dressing him once I figured out how to hold him! He had to go for a post mortem so I had to leave him there to travel home; another heartbreaking action. I was numb travelling home wondering if it really happened at all, it was so surreal.

Two weeks later I got to go back for the cremation and spend some more time with him but I was also angry as my family never got to meet him and there was only myself and my friend at the church. It didn’t seem to be a fitting tribute to his little life. I have some fabulous memories of my short time with him though, which I will forever treasure.

My advice to anyone going through this is to get as much support as you can, whether through friends, bereavement groups, books or online. Whatever works for you and helps you deal and cope with this situation. Unfortunately, too many parents have to go through this ordeal and not enough are able to talk about or get the necessary support. Hopefully this organisation can be some support to you.